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Irene

So many women have felt the same as you---afraid the implants aren't

the problem, or that even though they are the problem, they won't

get well after explant. But you have seen the results! The

overwhelmingly majority are doing great now. You have to believe

that will be your experience also. Keep moving towards finding the

right surgeon to remove them. I don't think you will be sorry!

love, kathy

-- In , " Irene " <iwebb40@y...> wrote:

>

> Oh my gosh...you guys are telling my story. I worked out and was

a

> dancer when I was younger and my breats did have the " look of " a

> gymnast. In other words, I was basically flat. However, I was

> healthy and was always complimented and how fit I was. That is,

> until I had my implants put in. Now I feel like going to the

grocery

> store is a big accomplishment. Sure, I may fill out my bathing

suit

> better, but instead of swimming around, I feel like just sitting

> there since I am sooo tired. I always feel bloated and the aches

and

> pains I have seem to move around each day. Each night I wonder

what

> will hurt tomorrow. This morning my chest feels hard as a rock.

I

> touch them and want to just scream. I want to have them removed

but

> then I wonder what if I still feel like this when they are taken

> out. Deep down I know these things (implants) are just a problem

> waiting to explode. I do not want to wait until that time so I am

> starting to research my options as to where I can go and who to

trust

> with this. For anyone who is thinking about have implants put in,

I

> say..DON'T. This is obviously not a natural procedure and your

body

> will begin to let you know....fast!

>

> > > Hello. I am new to the group and am interested in getting

> > information

> > > about saline breast implants. I have been considering getting

> them

> > for

> > > years really, but did not get serious about it until I began

> > entering

> > > fitness competitions this last year. I find that I am at a big

> > > disadvantage in all the competitions because all the other

girls

> > have

> > > implants. Being as fit as we all are at this level none of us

> have

> > any

> > > real breasts left. Breasts are made up of fat mostly and when

you

> > do

> > > allot of exercise you lose that. I once had full B cup breasts

and

> > > have shrunk to a AA. Well I have this bad feeling about the

> effects

> > > implants can have on health, but all the girls I meet in the

gyms

> > all

> > > tell me how great the implants are and how much better they

feel

> > with

> > > them.

> > > Can I get some honest information here? I have a consult with

a

> > local

> > > plastic surgeon but I have got to admit, the whole thing gives

me

> > the

> > > creeps. I feel uneasy about this. I wish there was another way

of

> > > enhancing my breasts beside implanting. For some reason it

seems

> > to be

> > > going against everything I worked for to get in this shape I

am

> > in, we

> > > eat health, we exercise and work so hard to be natural and

then to

> > > insert these things into us that are made up of silicone

seems so

> > > unatural. Everyone thinks I am nuts for even hesitating. The

> thing

> > is

> > > if I don't do I don't know that I will ever be able to win a

> > title. At

> > > least not in fitness competitions. I know that there are other

> > titles

> > > I could strive for.

> > > I appreciate any information.

> > > Olivia

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Olivia,

I'm so glad to hear you're not getting implants! . .

But I'm wondering . . . do you know enough about the

workings of the competition that you could clue them

in as to how dangerous implants are. .

Perhaps, if they would publish information in their

magazines, etc.

It wouldn't hurt to try!

Hugs,

Rogene

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Welcome to the board. For some reason your message wasn't sent to me till today (July 25). I'm glad your new mattress works so well for you and thanks for sharing that information.

There are rare bad side effects with almost all medications, including Enbrel. The one I read most warnings about is lymphoma but I don't know what the risk is for that. There is some chance that a person without RA or related diseases will contract lymphoma. There is a higher chance that a person who takes Enbrel or related medicines will contract lymphoma. However, there is also a higher chance that a person with aggressive RA who does not take Enbrel will contract lymphoma. I know of no studies that show that Enbrel is actually responsible for a higher chance of lymphoma but likewise there are no studies that show that it does not increase the chance of lymphoma. We have a lousy disease that makes us more susceptible to a lot of things. The one that is most clearly demonstrated is the susceptibility to permanent joint damage if the disease is not treated aggressively. There is probably some increased risk of serious, irreversible side effects with Enbrel but there is a significant risk of irreversible damage without adequate treatment for your diseases. Perhaps Sulfasalazine or some other medication like Methotrexate may be sufficient to control your diseases and only you and your doctor can determine that. In my case I need both Remicade (like Enbrel) and Methotrexate to allow me to function. I hope you make the right decision for you, whatever that right decision is. God bless.

----- Original Message -----

From: nantynannie

Rheumatoid Arthritis

Sent: Thursday, July 21, 2005 6:45 PM

Subject: New

Hi Everyone,First, I recently bought a Tempurpedic type mattress topper and it is wonderful! I have a very firm mattress and have to turn over every half hour or so-it works great to alleviate soreness at the hips, knees, ankles and ribs, wherever the bones touch the mattress. It is inexpensive at Kmart/Wallmart.Second, I have a question-I have Ankylosing Spondylitis, Dysautonomia, and just diagnosed with RA and I am on sulfasalazine but my rhuemy has been pushing Enbrel for about a year. I have so far refused. He insists that there are no bad side effects, but I have seen the ads for these drugs and they all warn against infection, fatal and otherwise and leukemia, etc. I know the chances are not high, but they are real. I feel like I am the only one who is not jumping on the band wagon here. I personally know someone who lost big chunks of her leg and was hospitalized for 7 weeks due to a near fatal staph infection after starting Remicade. Isn't anyone else concerned? Sometimes my rheumy almost acts like I don't want to get better or something, like I am being absolutely ridiculous. (He is with Worker's Comp) Please give me some advice. Thanks.Ann

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Hi Ann Welcome to the group I really don't know how i gat around

with out remicade I have been on it for over a year now and have had

no problems not even a cold I don't know much about Enbrel but there

are a lot of people here that take it I was one of the first person

to be put on remicade here in the doctors office I go to like I said

that was over a year a go and I wouldn't give it up if I had to I

would be willing to try Embrel good luck on your decidion

Sherrie

> Hi Everyone,

>

> First, I recently bought a Tempurpedic type mattress topper and it

is

> wonderful! I have a very firm mattress and have to turn over

every

> half hour or so-it works great to alleviate soreness at the hips,

> knees, ankles and ribs, wherever the bones touch the mattress. It

is

> inexpensive at Kmart/Wallmart.

>

> Second, I have a question-I have Ankylosing Spondylitis,

> Dysautonomia, and just diagnosed with RA and I am on sulfasalazine

> but my rhuemy has been pushing Enbrel for about a year. I have so

> far refused. He insists that there are no bad side effects, but I

> have seen the ads for these drugs and they all warn against

> infection, fatal and otherwise and leukemia, etc. I know the

chances

> are not high, but they are real. I feel like I am the only one who

is

> not jumping on the band wagon here. I personally know someone who

> lost big chunks of her leg and was hospitalized for 7 weeks due to

a

> near fatal staph infection after starting Remicade. Isn't anyone

> else concerned? Sometimes my rheumy almost acts like I don't want

to

> get better or something, like I am being absolutely ridiculous.

(He

> is with Worker's Comp) Please give me some advice.

>

> Thanks.

>

> Ann

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Hello Ann ,

I'm I do remicaid , MTX , and voltarian for the last year , Well you ask for advise theres noone but you that can make this desision , theres people out there that think we dont try to help or are just trying to out do each others storys when we post to ones ask for advise but its not fair to say " ( Ann go ahead with the REMICAID ITS GREAT ! ) yea it migt be for me or but you who knows so only you can make this disision. but I have been dxed since april 04 and in pain since 99 now i've developed hammer toes and cannt have them straightened because my diease is still very much active after being on remicaid for a year and haveing secondary raynards with it worse in my feet and toes ! and has eaten the joints of the arch of my left foot uo all since my remicaid ,, but may of started before i dont know but i didnt have the hammer toes before i can asure you that and it is h*ll

walking on the ends of your toes ! not to mention all the other joints so what I'm saying if this has slowed mine any i would of hated to fought it without it ! theres days i want to give up now so i cannt imagin . So i would really concider all my options before i was far along . I'm sure Harold will respond and hes a very smart person here and the other ladies that allways answer great people a very blessed site ! email me @ private any time you need , later john

nantynannie <nantynannie@...> wrote:

Hi Everyone,First, I recently bought a Tempurpedic type mattress topper and it is wonderful! I have a very firm mattress and have to turn over every half hour or so-it works great to alleviate soreness at the hips, knees, ankles and ribs, wherever the bones touch the mattress. It is inexpensive at Kmart/Wallmart.Second, I have a question-I have Ankylosing Spondylitis, Dysautonomia, and just diagnosed with RA and I am on sulfasalazine but my rhuemy has been pushing Enbrel for about a year. I have so far refused. He insists that there are no bad side effects, but I have seen the ads for these drugs and they all warn against infection, fatal and otherwise and leukemia, etc. I know the chances are not high, but they are real. I feel like I am the only one who is not

jumping on the band wagon here. I personally know someone who lost big chunks of her leg and was hospitalized for 7 weeks due to a near fatal staph infection after starting Remicade. Isn't anyone else concerned? Sometimes my rheumy almost acts like I don't want to get better or something, like I am being absolutely ridiculous. (He is with Worker's Comp) Please give me some advice. Thanks.Ann __________________________________________________

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Thank you and everyone else who replied. I guess I will have to

wait to see if this sulfasalazine works and then maybe the

methotrexate (sp?). Even though he is pushing the Enbrel I think I

should try the others first. How will I know if it is working? Will

the pain and fatigue lessen? If so, then it is not working. One

thing that I did not know is that the chances of lymphoma are

increased with having RA. That changes things a bit and I certainly

don't want to wait until it is too late and I can't walk. I have

erosions on the bones in my hands. Does anyone know how long until

they get deformed? , I am so sorry for what has happened. Thank

you for your story.

Ann

-- In Rheumatoid Arthritis , john no_way

<kentuckycowboy1@y...> wrote:

> Hello Ann ,

> I'm I do remicaid , MTX , and voltarian for the last year ,

Well you ask for advise theres noone but you that can make this

desision , theres people out there that think we dont try to help or

are just trying to out do each others storys when we post to ones ask

for advise but its not fair to say " ( Ann go ahead with the REMICAID

ITS GREAT ! ) yea it migt be for me or but you who knows so

only you can make this disision. but I have been dxed since april 04

and in pain since 99 now i've developed hammer toes and cannt have

them straightened because my diease is still very much active after

being on remicaid for a year and haveing secondary raynards with it

worse in my feet and toes ! and has eaten the joints of the arch of

my left foot uo all since my remicaid ,, but may of started before i

dont know but i didnt have the hammer toes before i can asure you

that and it is h*ll walking on the ends of your toes ! not to mention

all the other joints so what I'm saying if

> this has slowed mine any i would of hated to fought it without

it ! theres days i want to give up now so i cannt imagin . So i would

really concider all my options before i was far along . I'm sure

Harold will respond and hes a very smart person here and the other

ladies that allways answer great people a very blessed site ! email

me @ private any time you need , later john

>

>

>

>

>

>

>

>

>

>

>

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You will know if it is working by less pain and more range of motion of your joints. How well things work and how much less pain or more range of motion varies from one person to another. The general rule for the older RA medicines is to wait at least three months and preferably six months before giving up on them. However, additional medications may be given at any time to try to get things under control. The fatigue can be harder to get relief from and everyone is different in how it can be controlled and how much it can be controlled.

Some people begin to show deformity within a month and others go for many years with minimal treatment and still do not have any damage. Usually people want to take enough medications to be able to perform all their necessary functions and how much that is depends on the individual. I think caregivers of small children need the highest level of being able to function and some jobs require a high level of functioning. If you can perform all the functions you need to and you have tolerable pain then I would say that your RA is reasonably controlled and you should not have any rapid damage to your joints. However, periodic x-rays or MRIs will tell whether damage is procressing.

Your doctor is probably pushing Enbrel because that is usually one of the faster-working drugs and also one of the most effective. If you already have erosions I imagine your doctor wants to slow down RA quickly to reduce the damage you will have. It takes months to find out if lesser treatments work and if they do not work there is damage going on all that time. I think this is what the doctor is trying to accomplish but you should ask about it to make sure.

These are just my ideas about what we are looking for and I would like to hear what others think. People often have different ways of judging what it takes for success in treating RA.

I hope your RA is not progressing too fast and that you get it controlled before serious damage is done. God bless.

----- Original Message -----

From: nantynannie

Rheumatoid Arthritis

Sent: Thursday, July 28, 2005 11:57 AM

Subject: Re: New

Thank you and everyone else who replied. I guess I will have to wait to see if this sulfasalazine works and then maybe the methotrexate (sp?). Even though he is pushing the Enbrel I think I should try the others first. How will I know if it is working? Will the pain and fatigue lessen? If so, then it is not working. One thing that I did not know is that the chances of lymphoma are increased with having RA. That changes things a bit and I certainly don't want to wait until it is too late and I can't walk. I have erosions on the bones in my hands. Does anyone know how long until they get deformed? , I am so sorry for what has happened. Thank you for your story. Ann

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Harold is a smart man! I agree with his feedback. I think if your doc is recommending Enbrel and you can afford it, go for it, but I also say it is your choice, not one to take advice from people on here, but rather your doctor should know best. From all the feedback on here, and who is doing better than others, I see a trend that tells me taking Enbrel, Remicade or Humira is the most beneficial coupled with methotrexate or some other meds similar to that. All three can react differently to each person, so you do have to be an experiment sometimes and see what works best for you. Most people I've read about are still working, such as myself, full-time. Others that can't afford it, are taking prednisone, and if you've read previous postings, most are not happy with the side effects of that drug. And it doesn't prevent joint damage, only helps your pain.

If you are starting to see erosions on your fingers - I agree - that the doc is probably suggesting Enbrel to prevent any further damage.

Good luck - hang in there - and if you don't get relief - go back to your doc - you should see less pain and more energy - might not be every day - but in general you should feel a lot better - and he's right - it can take up to 3 or more months to even see the benefit of these 3 drugs I mentioned above. One of those might work better than the other as well. Harold Van Tuyl <hvantuyl@...> wrote:

You will know if it is working by less pain and more range of motion of your joints. How well things work and how much less pain or more range of motion varies from one person to another. The general rule for the older RA medicines is to wait at least three months and preferably six months before giving up on them. However, additional medications may be given at any time to try to get things under control. The fatigue can be harder to get relief from and everyone is different in how it can be controlled and how much it can be controlled.

Some people begin to show deformity within a month and others go for many years with minimal treatment and still do not have any damage. Usually people want to take enough medications to be able to perform all their necessary functions and how much that is depends on the individual. I think caregivers of small children need the highest level of being able to function and some jobs require a high level of functioning. If you can perform all the functions you need to and you have tolerable pain then I would say that your RA is reasonably controlled and you should not have any rapid damage to your joints. However, periodic x-rays or MRIs will tell whether damage is procressing.

Your doctor is probably pushing Enbrel because that is usually one of the faster-working drugs and also one of the most effective. If you already have erosions I imagine your doctor wants to slow down RA quickly to reduce the damage you will have. It takes months to find out if lesser treatments work and if they do not work there is damage going on all that time. I think this is what the doctor is trying to accomplish but you should ask about it to make sure.

These are just my ideas about what we are looking for and I would like to hear what others think. People often have different ways of judging what it takes for success in treating RA.

I hope your RA is not progressing too fast and that you get it controlled before serious damage is done. God bless.

----- Original Message -----

From: nantynannie

Rheumatoid Arthritis

Sent: Thursday, July 28, 2005 11:57 AM

Subject: Re: New

Thank you and everyone else who replied. I guess I will have to wait to see if this sulfasalazine works and then maybe the methotrexate (sp?). Even though he is pushing the Enbrel I think I should try the others first. How will I know if it is working? Will the pain and fatigue lessen? If so, then it is not working. One thing that I did not know is that the chances of lymphoma are increased with having RA. That changes things a bit and I certainly don't want to wait until it is too late and I can't walk. I have erosions on the bones in my hands. Does anyone know how long until they get deformed? , I am so sorry for what has happened. Thank you for your story. Ann__________________________________________________

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Hello Ann,

This is Steph in VA. I have had arthritis for almost 6 years. My meds

are: Prednisone, Ibuprofen, Azulfidine EN, Folic Acid, Methotrexate,

Flexeril and Remicade. I have been on Remicade for a little over 5 years. It

has worked great for me. Like said, your meds are a personal decision.

First of all, I would consider a new rheumy if your current one is not

supporting your decisions. Sometimes that isn't possible based on locality.

I was dx'd when I was 22 and I'll be 28 in September. For me, choosing the

most aggressive medication possible was the right choice for me. My rheumy

supports my desire to be informed on new meds and studies, even though I am

content with my current regimen.

Take care,

Steph in VA

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,

Thank you for your reply, unfortunately right now I am seeing a

worker's comp rheumy because my ankylosing spondy is related to

worker's comp. I have seen a very good well respected rheumy who

also recommended the Enbrel. My immunologist was involved in

developing Enbrel and he also recommends it. Maybe I am just being

paranoid! I am on so many medications I can't imagine taking another

one, but after reading about how much better everyone feels-I just

might have to try it. Thanks for your input.

Ann

> Hello Ann,

> This is Steph in VA. I have had arthritis for almost 6

years. My meds

> are: Prednisone, Ibuprofen, Azulfidine EN, Folic Acid,

Methotrexate,

> Flexeril and Remicade. I have been on Remicade for a little over 5

years. It

> has worked great for me. Like said, your meds are a personal

decision.

> First of all, I would consider a new rheumy if your current one is

not

> supporting your decisions. Sometimes that isn't possible based on

locality.

> I was dx'd when I was 22 and I'll be 28 in September. For me,

choosing the

> most aggressive medication possible was the right choice for me. My

rheumy

> supports my desire to be informed on new meds and studies, even

though I am

> content with my current regimen.

>

> Take care,

> Steph in VA

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Hi Ann,

My wife has RA and is also pretty scared of moving up her meds to

Enbrel. She told me to write and tell you you're NOT the only one afraid

to jump on the Enbrel bandwagon, lol. Anyway, her doc has " mentioned "

it (not necessarily recommended), but she realizes that eventually her

pain will be so bad she'll have to give Enbrel (or similar) a try.

Good luck,

Don & Eileen

nantynannie wrote:

> ,

>

> Thank you for your reply, unfortunately right now I am seeing a

> worker's comp rheumy because my ankylosing spondy is related to

> worker's comp. I have seen a very good well respected rheumy who

> also recommended the Enbrel. My immunologist was involved in

> developing Enbrel and he also recommends it. Maybe I am just being

> paranoid! I am on so many medications I can't imagine taking another

> one, but after reading about how much better everyone feels-I just

> might have to try it. Thanks for your input.

>

> Ann

>

>

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Don, I'm sorry that Eileen has RA but I am glad to see that you are supportive of her. Some people have a hard time getting their spouses to take their disease seriously. Fortunately my wife is supportive also.

Regarding Enbrel (and other RA medicines) almost all risks are not life-threatening and are easily reversed when the medication is stopped. With some medicines discomfort is fairly common but serious side effects are usually rare. On the other hand, untreated or undertreated RA usually leads to permanent joint damage for which there is no cure and only partial remedy by joint replacement. I prefer the rare and usually reversible risks of medication to the common and irreversible risks of RA. If you wait for joint damage before starting effective medication you will have that joint damage plus any more that happens before the medication becomes effective. Of course, even with the medication the joint damage will continue but just at a much lower rate.

I think of the life-threatening risks of RA medicines as being like the risk from rare food allergies. Every year people die from eating peanuts and yet most people eat peanuts with no problem whatsoever. The rare risk of sudden death does not stop most people even though there are other foods available instead of peanuts so avoiding peanuts is not too difficult. There are fewer choices available with RA medicines Of course, there are a lot of other foods besides peanuts that can cause fatal reactions in a very few people. We don't look for and avoid all of those foods but we just take the small risk involved. I think taking an RA medicine is somewhat like taking the risk of eating a food that can cause a life-threatening reaction in some people. The risk is so small that few of us ever think about it. God bless.

----- Original Message -----

From: Donk

Rheumatoid Arthritis

Sent: Sunday, July 31, 2005 7:01 AM

Subject: Re: Re: New

Hi Ann,My wife has RA and is also pretty scared of moving up her meds to Enbrel. She told me to write and tell you you're NOT the only one afraid to jump on the Enbrel bandwagon, lol. Anyway, her doc has "mentioned" it (not necessarily recommended), but she realizes that eventually her pain will be so bad she'll have to give Enbrel (or similar) a try.Good luck,Don & Eileen

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Thanks for the reply Harold. Yes, my wife is aware of the permanent

joint damage with RA. She and her Rheumy are keeping an eye on the

progression of the disease and adjusting her meds accordingly. Her doc

says her version of RA is an odd one. So, when/if the time comes that

Enbrel (etc) is required, she will take it.

Thanks,

Don & Eileen

Harold Van Tuyl wrote:

> Don, I'm sorry that Eileen has RA but I am glad to see that you are

> supportive of her. Some people have a hard time getting their spouses

> to take their disease seriously. Fortunately my wife is supportive also.

>

> Regarding Enbrel (and other RA medicines) almost all risks are not

> life-threatening and are easily reversed when the medication is

> stopped. With some medicines discomfort is fairly common but serious

> side effects are usually rare. On the other hand, untreated or

> undertreated RA usually leads to permanent joint damage for which there

> is no cure and only partial remedy by joint replacement. I prefer the

> rare and usually reversible risks of medication to the common and

> irreversible risks of RA. If you wait for joint damage before starting

> effective medication you will have that joint damage plus any more that

> happens before the medication becomes effective. Of course, even with

> the medication the joint damage will continue but just at a much lower rate.

>

> I think of the life-threatening risks of RA medicines as being like the

> risk from rare food allergies. Every year people die from eating

> peanuts and yet most people eat peanuts with no problem whatsoever. The

> rare risk of sudden death does not stop most people even though there

> are other foods available instead of peanuts so avoiding peanuts is not

> too difficult. There are fewer choices available with RA medicines Of

> course, there are a lot of other foods besides peanuts that can cause

> fatal reactions in a very few people. We don't look for and avoid all

> of those foods but we just take the small risk involved. I think taking

> an RA medicine is somewhat like taking the risk of eating a food that

> can cause a life-threatening reaction in some people. The risk is so

> small that few of us ever think about it. God bless.

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Dr. Harbut, Southfield Michigan.

Really understands what implants do to women.

Lynda

At 08:54 PM 1/9/2006, you wrote:

>Hi everyone,

>

>I have just started to research the dangers of saline implants and

>came across your wonderful group.

>

>I am seeing my rheumatologist on the 19th and I would like him to test

>me for silicone poisoning...if possible at all. Has anyone of you done

>this test?

>

>My husband's been begging me for two years to go to the Mayo Clinic -

>my gastroenterologist wants me to go there too; my pulmonary and

>rheumatologist are not so strongly opinioned on this one - but now

>I've read in some of your posts that Mayo does not acknowledge

>silicone related diseases there! Any recommendations for good doctors

>in Illinois (live in Chicago) or neighboring states?

>

>I am a 34,5 year old Dutch female. I came to Chicago four years ago

>and in the beginning of 2002 I decided to get a breast augmentation

>and became so sick a couple of months later, that I had to leave the

>study program I emigrated for! I took a leave of absence;

>unfortunately, even though I had a full fellowship for 6 years

>(scholarship) I could not return to the program due to my physical

>condition.

>

>I have had countless examinations, MRI's, pulmonary function tests, a

>Cat-scan every 3 month, endoscopies (upper/lower), sleep study, etc. I

>have been on so many different kinds of medication, I cannot even

>start to list it on the top of my head. I just recently came of

>prednisone (30 mg/daily) which I took for almost 10 months and now I

>feel so bad again that I can hardly move because of the fatigue and

>pain I am in.

>

>I am currently diagnosed with Fibromyalgia and sarcoidosis. I have

>many nodules/some scar tissue in my lungs, but nobody can really

>explain the terrible pain I have in my muscles (big lumps/nodules -

>especially in neck/shoulder area, upper back and breast area and

>arms), I have nodules in my lymph nodes, which hurt continuously

>pretty bad, my abdomen swells as if I am 8 months pregnant (but I

>don't have IBS/IBD/allergies etc. the gastroenterologists (seen 2)

>don't know what is wrong with me and tried every kind of medicine they

>could think of (couple for the before mentioned illnesses) on me -

>nothing worked). I have terrible 'sweat attacks', dry eyes, episodes

>of dizziness, heart palpitations, ringing ear episodes, stabbing pains

>in head, extreme fatigue, pain in ALL my muscles, many ligaments and

>bones, severe morning stiffness in my neck, back, hands; I have had so

>much stomach aching I could not eat anything accept porridge for over

>a year - still my stomach was fine (although I do have H.pylori), etc.

>Could not participate in any kind of sport - I would be very tired and

>in pain, and when I tried, I would be in a lot of trouble up to two

>(!!) weeks after very moderate beginner level yoga etc! I, who'd

>always been a very athletic person and wanted to go to ballet school

>and danced for hours and hours every day until my late teens!!

>

>I would have so many troubles, I was unable to do anything for about a

>year and a half; even go out and talk to friends or talking to friends

>in the Netherlands on the phone would be too much of an effort. Could

>not lie down for a long time; unable to work; unable to type for a

>longer period of time; too tired and in too much pain to walk, cook

>etc. Cooking was (still is) my biggest hobby! I worked as a assistant

>chef while getting my Masters and have cooked for parties of 600

>people! Now I was unable to cook for my husband and myself, even

>though I would have loved it.

>

>I was - and now that I am off the 30mg Prednisone am again - extremely

>tired, as if the energy is sucked out of me. Wake up as if I have a

>terrible hangover, buzzing head and everything, while I hardly ever

>drink at all (only a couple of times a year, e.g., on a party I have

>to attend for my husband's work - depending on the medications I am on

>at that moment, because there have been periods over the last 4 years

>that I did not drink anything at all). While in college, I worked many

>hours a week, every weekend, went out with friends on Saturdays,

>finished my Master's on time AND had energy to spare! Now my life has

>turned into this Twilight Zone episode turned really ugly!!

>

>My team of doctors - gastro, rheumatologist, and pulmonary doc - don't

>know what to do with me: None of the medication seems to help. Every

>single one knows I have saline implants. I have an appointment on the

>19th, I am going to request a blood test to determine if I have a

>silicone poisoning. I am afraid I will have it but I am not sure what

>my rheumatologist's opinion is on the much debated safety/health

>issues of silicone in human beings. It's sad, because I really hated

>the fact that I hardly had any breasts at all, but this life is like a

>living hell so I probably have to get them out! My augmented breast

>look great and feel soft. But I still suspect that my physical

>illnesses will be related to the implants.

>

>Thanks for your time and for the fact that you create a wonderful

>opportunity to vent and get advice.

>

>Cheers,

>

>

>

>

>

>

>

>

>

>Opinions expressed are NOT meant to take the place of advice given

>by licensed health care professionals. Consult your physician or

>licensed health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians

>mislead you. Find out what the facts are, and make your own

>decisions about how to live a happy life and how to work for a

>better world. " - Linus ing, two-time Nobel Prize Winner (1954,

>Chemistry; 1963, Peace)

>

>See our photos website! Enter " implants " for access at this link:

><http://.shutterfly.com/action/>http://.shutterfly.co\

m/action/

>

>

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Guest guest

Hi Lynda:

Thanks for your referral. I'll look into him and call his office this

week.

Best,

Audrey

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Welcome Audrey and ! I had my explant in June after having the

implants for 11 years. I was once an extremely active person dancing

20+ hours a week on top of coaching gymnastics full time. I became ill

soon after implanting and eventually was near total disability.

nothing the doctors gave me worked because I had developed Multiple

Chemical Sensitivity. I am now 6 months post explant and I have my

life back. I've started my own dance school and I am teaching 3

classes a week already. I have worked very hard with diet and

supplements to rid my body of the toxins, and I still have a long way

to go, but I am able to dance!

I hope this gives you hope that once you remove your implants you too

can regain your life as it once was. It's a long and difficult road,

but oh so very worth it. I even love my tiny little boobs! I look back

at the pictures of me last year and realize how fat the implants made

me appear.

Best wishes,

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Audrey,

Welcome to ! . . . I'm certain you're in

the right place! . . . There are tons of information

here and in the archives under Files and Links.

You're getting the implant run-around . . . The

medical profession is programmed to say implants

aren't a problem . . . even though they see sick women

repeatedly! . . . As long as that's the AMA official

stance, they won't get in trouble! Those who do take a

public stand against implants run into all kinds of

peer pressure!

Your symptoms are soooooo much like many women who

come here. . . The good news is that, it really

doesn't matter whay they diagnose you with, all that

will change after you get your implants out and you do

some serious detoxing.

It may take ysome time to feel 100% normal . . . You

may never be as healthy as you were before, but life

will be good again! I had silicone gel implants for 16

years. They leaked from day one. . . Even now, after

almost 13 years of being explanted, I still have to be

careful. But life is great and I do whatever I want to

do!

Most rheumatologists are horrible when it comes to

their treatment of implanted women! . . . so, if

he/she is non-supportive, don't be surprised!

Most women who've had breast implants have a systemic

yeast/fungal/Candida problem . . . getting this under

control can give you a step up, even while you still

have your implants. I'd suggest reading up on Candida.

This alone can make you very sick. It can affect your

gut so you can't get necessary nutrition from their

food. Garden of Life's Fungal Defense is a good place

to start - one bottle - then Primal Defense for an

indefinite period. Fungal Defense will reduce the

number of negative organisms, then Primal Defense will

start repopulating your system with beneficial

organisms. . . It's important that you drink plenty of

non-chlorinated water with these products! Minimum 1/2

ounce per pound of body weight daily.

www.appleadayandbeyond.com carries these products. . .

Instead of ordering online, call and ask for a

preferred customer discount given to support groups.

Eating very healthy can help too . . . " The Maker's

Diet " - Rubin is a good discussion on why we need to

avoid sugar and processed foods as well as a guide for

better eating . . . It can be a difficult diet to

follow - but taken as a guide to work towards, it's

not so overwhelming.

It's important that your implants are removed " en

bloc " . . . that is, the capsule is removed with the

implant still inside so, in the even the implants are

contaminated, nothing will be spilled into your chest

cavity. A good doctor will also use drains following

surgery.

Your explant may be covered by your insurance . . .

The recommended surgeons know the insurance codes to

do this. If you are in a network, you may have to

search for a network doctor very carefully.

I hope this isn't overwhelming! . . . You can't do

everything at once. . . Please read things over, make

some notes, then find a starting place and concentrate

on one thing at a time. You'll get there!

Hugs and prayers,

Rogene

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, glad to hear you're doing well. One thing I noticed in my

pictures is that I looked very tired - I just had a funny look in my

eyes when I look at every picture taken of me during my 6 months

with implants. Now I've seen post-op pictures and my eyes look

happy again. I love my little boobs, too. I missed them.

Sis

>

> Welcome Audrey and ! I had my explant in June after having

the

> implants for 11 years. I was once an extremely active person

dancing

> 20+ hours a week on top of coaching gymnastics full time. I became

ill

> soon after implanting and eventually was near total disability.

> nothing the doctors gave me worked because I had developed

Multiple

> Chemical Sensitivity. I am now 6 months post explant and I have my

> life back. I've started my own dance school and I am teaching 3

> classes a week already. I have worked very hard with diet and

> supplements to rid my body of the toxins, and I still have a long

way

> to go, but I am able to dance!

>

> I hope this gives you hope that once you remove your implants you

too

> can regain your life as it once was. It's a long and difficult

road,

> but oh so very worth it. I even love my tiny little boobs! I look

back

> at the pictures of me last year and realize how fat the implants

made

> me appear.

>

> Best wishes,

>

>

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Hi Audrey

Welcome to our group. I am sorry to hear that you are so sick.

Yes, I do think your implants are involved and need to come out. I

would not go to Mayo's. They seem to never really help anyone that

I know of. I almost went there myself four years ago before I found

this site and got an explant. You live in illinois and I would

recommend Dr.Mercola for a doctor. He has a very famous website and

seems to have alot of good advice. , one of the ladies on this

site that got well after explant, used him for her doctor. I know

he believes that implants can make you ill, and he also is a doctor

who uses antibiotic therapy. I mention this because you said that

you have sarcoidosis and if you actually do, antibiotic therapy does

help. They have had good success with what is called the Marshall

Protocol. Basically it uses antibiotic therapy with Vitamin D

avoidance and benicar. Dr. Mercola is really stressed the role of

diet in getting well. He uses his own protocol and also touts that

of Dr. Rubin who wrote the Maker's Diet. He uses alot of

alternative therapies also, but I think he is much more openminded

than most other doctors and will really sink his teeth into your

case. As far as plastic surgeons, I used Dr.Feng in Ohio. I drove

there to get explanted and I live in illinois also. I live about 3

hours away from you. She believes in implant illness and has done

many many explants for women on this site.

So I would definitely make an appt. with Dr. Mercola and a plastic

surgeon to get your implants out. I do believe you can get better.

Please feel free to ask any questions you might have. We are here

to help in any way we can!

Hugs,Kathy

>

> Hi everyone,

>

> I have just started to research the dangers of saline implants and

> came across your wonderful group.

>

> I am seeing my rheumatologist on the 19th and I would like him to

test

> me for silicone poisoning...if possible at all. Has anyone of you

done

> this test?

>

> My husband's been begging me for two years to go to the Mayo

Clinic -

> my gastroenterologist wants me to go there too; my pulmonary and

> rheumatologist are not so strongly opinioned on this one - but now

> I've read in some of your posts that Mayo does not acknowledge

> silicone related diseases there! Any recommendations for good

doctors

> in Illinois (live in Chicago) or neighboring states?

>

> I am a 34,5 year old Dutch female. I came to Chicago four years ago

> and in the beginning of 2002 I decided to get a breast augmentation

> and became so sick a couple of months later, that I had to leave

the

> study program I emigrated for! I took a leave of absence;

> unfortunately, even though I had a full fellowship for 6 years

> (scholarship) I could not return to the program due to my physical

> condition.

>

> I have had countless examinations, MRI's, pulmonary function

tests, a

> Cat-scan every 3 month, endoscopies (upper/lower), sleep study,

etc. I

> have been on so many different kinds of medication, I cannot even

> start to list it on the top of my head. I just recently came of

> prednisone (30 mg/daily) which I took for almost 10 months and now

I

> feel so bad again that I can hardly move because of the fatigue and

> pain I am in.

>

> I am currently diagnosed with Fibromyalgia and sarcoidosis. I have

> many nodules/some scar tissue in my lungs, but nobody can really

> explain the terrible pain I have in my muscles (big lumps/nodules -

> especially in neck/shoulder area, upper back and breast area and

> arms), I have nodules in my lymph nodes, which hurt continuously

> pretty bad, my abdomen swells as if I am 8 months pregnant (but I

> don't have IBS/IBD/allergies etc. the gastroenterologists (seen 2)

> don't know what is wrong with me and tried every kind of medicine

they

> could think of (couple for the before mentioned illnesses) on me -

> nothing worked). I have terrible 'sweat attacks', dry eyes,

episodes

> of dizziness, heart palpitations, ringing ear episodes, stabbing

pains

> in head, extreme fatigue, pain in ALL my muscles, many ligaments

and

> bones, severe morning stiffness in my neck, back, hands; I have

had so

> much stomach aching I could not eat anything accept porridge for

over

> a year - still my stomach was fine (although I do have H.pylori),

etc.

> Could not participate in any kind of sport - I would be very tired

and

> in pain, and when I tried, I would be in a lot of trouble up to two

> (!!) weeks after very moderate beginner level yoga etc! I, who'd

> always been a very athletic person and wanted to go to ballet

school

> and danced for hours and hours every day until my late teens!!

>

> I would have so many troubles, I was unable to do anything for

about a

> year and a half; even go out and talk to friends or talking to

friends

> in the Netherlands on the phone would be too much of an effort.

Could

> not lie down for a long time; unable to work; unable to type for a

> longer period of time; too tired and in too much pain to walk, cook

> etc. Cooking was (still is) my biggest hobby! I worked as a

assistant

> chef while getting my Masters and have cooked for parties of 600

> people! Now I was unable to cook for my husband and myself, even

> though I would have loved it.

>

> I was - and now that I am off the 30mg Prednisone am again -

extremely

> tired, as if the energy is sucked out of me. Wake up as if I have a

> terrible hangover, buzzing head and everything, while I hardly ever

> drink at all (only a couple of times a year, e.g., on a party I

have

> to attend for my husband's work - depending on the medications I

am on

> at that moment, because there have been periods over the last 4

years

> that I did not drink anything at all). While in college, I worked

many

> hours a week, every weekend, went out with friends on Saturdays,

> finished my Master's on time AND had energy to spare! Now my life

has

> turned into this Twilight Zone episode turned really ugly!!

>

> My team of doctors - gastro, rheumatologist, and pulmonary doc -

don't

> know what to do with me: None of the medication seems to help.

Every

> single one knows I have saline implants. I have an appointment on

the

> 19th, I am going to request a blood test to determine if I have a

> silicone poisoning. I am afraid I will have it but I am not sure

what

> my rheumatologist's opinion is on the much debated safety/health

> issues of silicone in human beings. It's sad, because I really

hated

> the fact that I hardly had any breasts at all, but this life is

like a

> living hell so I probably have to get them out! My augmented breast

> look great and feel soft. But I still suspect that my physical

> illnesses will be related to the implants.

>

> Thanks for your time and for the fact that you create a wonderful

> opportunity to vent and get advice.

>

> Cheers,

>

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Hi Kathy,

Thank you for your great advice! I am going to check out dr Mercola's

site in a minute and read more about the Marshall

Protocol.

My team of docs diagnosed me with sarcoidosis, because of the nodules

and scarring in lungs, pulmonary function tests were off, nodules in

lymphs (necks, armpits, around heart – apparently) but now I am

getting scared that some of those nodules (in neck) might be silicone

from the implant envelope. But maybe my fantasy is playing tricks on

me now – after a day of reading about all the horror stories and

watching explant surgery videos etc. one might get a wee bit anxious.

Normally I never am – I only have been nervous in my life one: Not for

an exam or presentation but when cutting my long hair on the age of 25

(there's that appearance thing again). BTW big mistake too – cutting

my hair.

I am immediately going to read about how to improve my diet, so I will

be able to get well again.

I have read wonderful things about dr. Feng, and she is on my list of

PSs I am considering in using in the future. I am very scared ending

up completely flat and I would do anything to prevent that (if I

can?!) But I have to admit – the padded bras don't seem so horrible

anymore now.

Thank you so much for your help, advice, and openness!

Cheers,

Audrey

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Audrey,

Given enough money and pain, they can create a breast

for you with tissue from your stomach or back !!!!

They move some muscle into position . . . It's called

a tram or dorsel flap procedure.

There's a new procedure that's uses microsurgery where

they move fatty tissue with its blood supply. I don't

think many doctors are doing this.

It's called the " Surgery from Hell " . . . I wouldn't

do it! Even if I were totally breastless!

Hugs,

Rogene

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Wow, you have been through alot. I am so sorry that you have!

In Illinois, your best bet is probably going to be Dr. ph

Mercola for a medical doctor. He has had experience with implant

illness, and understands how bad these are for us. Let us know if

you are able to see him. I am certain he can help you get on a

health recovery program. Explanting will have to be done by someone

else, and as far as I know, we have no Illinois plastic surgeons

listed for proper explant. You might have to travel out of state.

Let us know if you need more help!

Patty

>

> Hi everyone,

>

> I have just started to research the dangers of saline implants and

> came across your wonderful group.

>

> I am seeing my rheumatologist on the 19th and I would like him to

test

> me for silicone poisoning...if possible at all. Has anyone of you

done

> this test?

>

> My husband's been begging me for two years to go to the Mayo

Clinic -

> my gastroenterologist wants me to go there too; my pulmonary and

> rheumatologist are not so strongly opinioned on this one - but now

> I've read in some of your posts that Mayo does not acknowledge

> silicone related diseases there! Any recommendations for good

doctors

> in Illinois (live in Chicago) or neighboring states?

>

> I am a 34,5 year old Dutch female. I came to Chicago four years ago

> and in the beginning of 2002 I decided to get a breast augmentation

> and became so sick a couple of months later, that I had to leave

the

> study program I emigrated for! I took a leave of absence;

> unfortunately, even though I had a full fellowship for 6 years

> (scholarship) I could not return to the program due to my physical

> condition.

>

> I have had countless examinations, MRI's, pulmonary function

tests, a

> Cat-scan every 3 month, endoscopies (upper/lower), sleep study,

etc. I

> have been on so many different kinds of medication, I cannot even

> start to list it on the top of my head. I just recently came of

> prednisone (30 mg/daily) which I took for almost 10 months and now

I

> feel so bad again that I can hardly move because of the fatigue and

> pain I am in.

>

> I am currently diagnosed with Fibromyalgia and sarcoidosis. I have

> many nodules/some scar tissue in my lungs, but nobody can really

> explain the terrible pain I have in my muscles (big lumps/nodules -

> especially in neck/shoulder area, upper back and breast area and

> arms), I have nodules in my lymph nodes, which hurt continuously

> pretty bad, my abdomen swells as if I am 8 months pregnant (but I

> don't have IBS/IBD/allergies etc. the gastroenterologists (seen 2)

> don't know what is wrong with me and tried every kind of medicine

they

> could think of (couple for the before mentioned illnesses) on me -

> nothing worked). I have terrible 'sweat attacks', dry eyes,

episodes

> of dizziness, heart palpitations, ringing ear episodes, stabbing

pains

> in head, extreme fatigue, pain in ALL my muscles, many ligaments

and

> bones, severe morning stiffness in my neck, back, hands; I have

had so

> much stomach aching I could not eat anything accept porridge for

over

> a year - still my stomach was fine (although I do have H.pylori),

etc.

> Could not participate in any kind of sport - I would be very tired

and

> in pain, and when I tried, I would be in a lot of trouble up to two

> (!!) weeks after very moderate beginner level yoga etc! I, who'd

> always been a very athletic person and wanted to go to ballet

school

> and danced for hours and hours every day until my late teens!!

>

> I would have so many troubles, I was unable to do anything for

about a

> year and a half; even go out and talk to friends or talking to

friends

> in the Netherlands on the phone would be too much of an effort.

Could

> not lie down for a long time; unable to work; unable to type for a

> longer period of time; too tired and in too much pain to walk, cook

> etc. Cooking was (still is) my biggest hobby! I worked as a

assistant

> chef while getting my Masters and have cooked for parties of 600

> people! Now I was unable to cook for my husband and myself, even

> though I would have loved it.

>

> I was - and now that I am off the 30mg Prednisone am again -

extremely

> tired, as if the energy is sucked out of me. Wake up as if I have a

> terrible hangover, buzzing head and everything, while I hardly ever

> drink at all (only a couple of times a year, e.g., on a party I

have

> to attend for my husband's work - depending on the medications I

am on

> at that moment, because there have been periods over the last 4

years

> that I did not drink anything at all). While in college, I worked

many

> hours a week, every weekend, went out with friends on Saturdays,

> finished my Master's on time AND had energy to spare! Now my life

has

> turned into this Twilight Zone episode turned really ugly!!

>

> My team of doctors - gastro, rheumatologist, and pulmonary doc -

don't

> know what to do with me: None of the medication seems to help.

Every

> single one knows I have saline implants. I have an appointment on

the

> 19th, I am going to request a blood test to determine if I have a

> silicone poisoning. I am afraid I will have it but I am not sure

what

> my rheumatologist's opinion is on the much debated safety/health

> issues of silicone in human beings. It's sad, because I really

hated

> the fact that I hardly had any breasts at all, but this life is

like a

> living hell so I probably have to get them out! My augmented breast

> look great and feel soft. But I still suspect that my physical

> illnesses will be related to the implants.

>

> Thanks for your time and for the fact that you create a wonderful

> opportunity to vent and get advice.

>

> Cheers,

>

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Guest guest

Hi there,

Welcome to the group:) There are plenty of people that can answer any questions you may have here!

Is your son/daughter the first to have bleph ??? Our son Ethan (wearing the pumpkin suit) is 3 years old, and is the very first to have BPES in our families.....:) He has had no surgeries as yet...He runs around looking straight ahead! doesn't tilt his head up, never has:) just raises his eyebrows a little:) He goes for his 3 year check up at the opthalmologist on April 18th, so we will see how that goes....

Has your child had any surgeries? Do you have a pic you can share:) We would all love to see if you do:) As you can see by the web site there are 100's of photos of adults and children around the world with bpes to see...so very interesting, makes you feel like your not the only one:)

Have you ever met anyone else in person with BPES? We got to meet a mother and daughter with it, that was really great! They are also from New Zealand,....there is a pic of them with our son Ethan from there visit, at the site...

Welcome again....talk soon:)

leanne NZ

-- blepharophimosis new

we have a ten year old with Bpei looking for any help or info thanks

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thank you for your reply. we adopted our daughter at 41/2 she had been extreamly abused and is mentally retarded. I could not find a place to see other (or your) photos how do I access that. I will get one of mt older boys to show me how to post a photo of delilah. She has had one major reconstructive surgery where they made eye lids and transfered many muscles in her eyes and rotated the sockets. Plus two tucks. Look forward to talking to you again kim parsonscostellos <tltne@...> wrote: Hi there, Welcome to the group:) There are plenty of people that can answer any questions you may have here! Is your son/daughter the first to have bleph ??? Our son Ethan (wearing the pumpkin suit) is 3 years old, and is the very first to have BPES in our families.....:) He has had no surgeries as yet...He runs around looking straight ahead! doesn't tilt his head up, never has:) just raises his eyebrows a little:) He goes for his 3 year check up at the opthalmologist on April 18th, so we will see how that goes.... Has your child had any surgeries? Do you have a pic you can share:) We would all love to see if you do:) As you can see by the web site there are 100's of photos of adults and children around the world with bpes to see...so very interesting, makes you feel like your not the only one:)

Have you ever met anyone else in person with BPES? We got to meet a mother and daughter with it, that was really great! They are also from New Zealand,....there is a pic of them with our son Ethan from there visit, at the site... Welcome again....talk soon:) leanne NZ -- blepharophimosis

new we have a ten year old with Bpei looking for any help or info thanks

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Hi Kim

This website is amazing!  I have BPES and

had my surgeries as a child.  I imagine that technologies have come on ten fold

since then.

Where in the world are you?

If you have any queries someone (Aussie Rob

- legend!) will have answers, you are by no means alone.

Take care

Bryony

From:

blepharophimosis

[mailto:blepharophimosis ]

On Behalf Of kim parsons

Sent: 06 April 2006 02:25

blepharophimosis

Subject: Re: blepharophimosis

new

thank you for your reply. we adopted our daughter at 41/2

she had been extreamly abused and is mentally retarded. I could not find

a place to see other (or your) photos how do I access that. I will get

one of mt older boys to show me how to post a photo of delilah. She has

had one major reconstructive surgery where they made eye lids and transfered

many muscles in her eyes and rotated the sockets. Plus two tucks.

Look forward to talking to you again kim parsons

costellos <tltne@...> wrote:

Hi there,

Welcome to the group:) There are plenty of people that can

answer any questions you may have here!

Is your son/daughter the first to have bleph ???

Our son Ethan (wearing the pumpkin suit) is 3 years old, and is the very

first to have BPES in our families.....:) He has had no surgeries as yet...He

runs around looking straight ahead! doesn't tilt his head up, never has:)

just raises his eyebrows a little:) He goes for his 3 year check up at

the opthalmologist on April 18th, so we will see how that goes....

Has your child had any surgeries? Do you have a pic you

can share:) We would all love to see if you do:) As you can see by

the web site there are 100's of photos of adults and children

around the world with bpes to see...so very interesting, makes you feel like

your not the only one:)

Have you ever met anyone else in person with BPES? We got

to meet a mother and daughter with it, that was really great! They are

also from New Zealand,....there

is a pic of them with our son Ethan from there visit, at the

site...

Welcome again....talk soon:)

leanne NZ

--

blepharophimosis new

we have a ten year old with Bpei looking for any help or

info thanks

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