Hello

[Guest guest]

Welcome to the group, but sorry that you have to be here. This is a very

informative group with people who actually DO know what you are going through. I

hope better and pain free days for you. I'm a 28 year old female, mother to two,

so far diagnosed with RA, carpal tunnel palsy, migraines amongst other things.

Take care of yourself...

kerri sue

pattyk630 <babies1@...> wrote:

I am new to the group, and I thought I would tell you a little about

myself. I am a 49 year old female that feels 100. I am a nurse in a

very busy pediatric practice. I have hypothyroidism and started

having a lot of problems, so I went to the doctor, and more doctors,

and then more doctors. My blood test were off the wall for RA, but

then came a additional problem - hemachromatosis, or better called

iron overload. This also causes a different type of arthritis, and

joint pain. I am looking forward to talking to others with RA and

venting every now and then. My family, husband, two daughters, and

four grandchildren are wonderful and supportive, but they only see the

outside and can't understand all that is happening on the inside. I am

really looking forward to this group.

[Guest guest]

Hello and welcome to the group, 35 year old mother of 2 and one hubby

with newly diagnosed RA (in May) I am a OB sonographer, Dallas county

hospital. This a good group to be in, it is nice to be with a group

that understand that although you look fine, the pain is very real.

Cassy

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in

a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see

the

> outside and can't understand all that is happening on the inside. I

am

> really looking forward to this group.

[Guest guest]

Hello Kerri,

I can't imagine being a young Mother with the problems. When my son was young

there is so much they need us for. I hope you have lots of help from family?

Thanks for the welcome though. I wish I wasn't here also. The pain and being

so tired makes me sad, plus living alone.

kerri paquette <ksp2242@...> wrote:

Welcome to the group, but sorry that you have to be here. This is a very

informative group with people who actually DO know what you are going through. I

hope better and pain free days for you. I'm a 28 year old female, mother to two,

so far diagnosed with RA, carpal tunnel palsy, migraines amongst other things.

Take care of yourself...

kerri sue

pattyk630 <babies1@...> wrote:

I am new to the group, and I thought I would tell you a little about

myself. I am a 49 year old female that feels 100. I am a nurse in a

very busy pediatric practice. I have hypothyroidism and started

having a lot of problems, so I went to the doctor, and more doctors,

and then more doctors. My blood test were off the wall for RA, but

then came a additional problem - hemachromatosis, or better called

iron overload. This also causes a different type of arthritis, and

joint pain. I am looking forward to talking to others with RA and

venting every now and then. My family, husband, two daughters, and

four grandchildren are wonderful and supportive, but they only see the

outside and can't understand all that is happening on the inside. I am

really looking forward to this group.

[Guest guest]

Welcome!

I am glad you found the group. There is great support and information.

I just want you to know that I am here if you need a shoulder. Can't

wait to know you, hugs Tawny

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in

a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see

the

> outside and can't understand all that is happening on the inside. I

am

> really looking forward to this group.

[Guest guest]

Hi Patty, and welcome to the group!

I'm Judi, 59, wife to Ron (who has Parkinson's) and grandmother to 4

beautiful little ones, 2-year old triplets and a 5-year old. Their

mother is our only child, our daughter, and they live nearby which is

nice. But, like you, they really don't understand what we're going

through, and sometimes I'd like to switch bodies for a few days just to

give them an idea. I don't have RA, but Dercum's Disease (adiposis

dolorosa), FM, and more recently diagnosed with MS.

But I have always had a " glass half full " attitude, and try to smile

back at the world as much as I can. I'm fortunate that I don't have to

work since Ron retired 7 years ago, and if I am having a down day, I

just go ahead and have it...unless he's having a down day, and then I

wait until he's back up again!

I know you'll find companionship, understanding, and information here,

as I have and this group is very precious to me.

Peace,

Judi

[Guest guest]

Hi Patty:

Welcome to the group. You have come to group of very

supportive people, and our moderators find us medical

and drug information, studies, and new research. I

have been a member for several years now and have

found it to be a wonderful place to come because we

all truly understand what each other is going through.

As the saying goes " whine and cheese served here

everyday " , so feel free to vent when you need to.

I am 51, have been diagnosed with RA for 6 years, and

also have Raynaud's and Fibromyalgia. I am married

and have two children, a son 21 and a daughter 18. My

family is great, but it took them a while to

understand what I go through (although never as well

as the people in this group do), and do help me quite

a lot. We have a small farm with horses, chickens,

ducks, geese, and dogs, and love it.

I take Enbrel, Methotrexate, Ultracet, Mobic, Folic

Acid, Milk Thistle, and Glucosamine for the RA, and

for the Fibro I am on Skelaxin and Trazadone. I also

take an anti-depressant, blood pressure med, and

asthma med. Whew - never did I think in a million

years I would have to take so much meds.

You have a very busy job - are you able to keep

working? I hope that your doctors have started you on

medication - I am sure you know how important it is to

treat this disease aggressively from the start. Best

of luck to you and keep coming back -

Kathe in CA

--- pattyk630 <babies1@...> wrote:

> I am new to the group, and I thought I would tell

> you a little about

> myself. I am a 49 year old female that feels 100.

> I am a nurse in a

> very busy pediatric practice. I have hypothyroidism

> and started

> having a lot of problems, so I went to the doctor,

> and more doctors,

> and then more doctors. My blood test were off the

> wall for RA, but

> then came a additional problem - hemachromatosis, or

> better called

> iron overload. This also causes a different type of

> arthritis, and

> joint pain. I am looking forward to talking to

> others with RA and

> venting every now and then. My family, husband, two

> daughters, and

> four grandchildren are wonderful and supportive, but

> they only see the

> outside and can't understand all that is happening

> on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Welcome! I'm looking forward to getting to know you. I'm married to

a great guy, I'm 51, live in Florida and have

4 grown children and 4 grandchildren, all back in NJ

I've had RA since my 20's.

a

On Sep 4, 2005, at 9:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

>

>

[Guest guest]

Patty,

A member of a diabetes list I am on was recently diagnosed with

hemachromatosis. The doctor who runs that list suspected she had it

after she posted her lab results. He was correct. Do they have to take

blood from you every so often as the treatment for this? If this causes

joint pain and you also have RA, you will have a heck of a time keeping

all the pains straight, won't you? Anyway, welcome to the group. I hope

you will be getting some relief soon. Sue

On Sunday, September 4, 2005, at 09:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

[Guest guest]

Hello Sue,

Nice to meet you. Yes, I was being bleed every other week for months until my

ferritin level was down to 42. Now it is just once in a while - 6 to 8 weeks.

My younger brother also has it and his was so high he was being bleed twice a

week for months. I had an older brother who was a severe diabetic - renal

failure. My doctor really feels that he also had it, but it was never found.

He had all the signs. We lost him at 47 years old. I am so happy that they

found it in you - now you can control it with the diabetes. I have two more

brothers who need tested for it. Yes, the pain can be very bad at time and the

amount of medications is terrible. I just entered a clinical study for Humira

injections. Third shot today, its every other week and it seems to be helping

alot. Only time will tell. I don't know how your doctor is, but mine is

fantastic for the hemachromatosis. One thing I can say is do research, know

your blood levels and push your doctor if you have to. One thing

I found is not many doctors know much about it - yes, they know what it is, but

thats about it. The first doctor I saw told me not to worry about the iron

level being so high - " it's ok " I changed doctors real fast, I knew something

was wrong, just didn't know what. I hope to hear from you again and I do wish

you all the luck. Patty

Sue <marysue@...> wrote:

Patty,

A member of a diabetes list I am on was recently diagnosed with

hemachromatosis. The doctor who runs that list suspected she had it

after she posted her lab results. He was correct. Do they have to take

blood from you every so often as the treatment for this? If this causes

joint pain and you also have RA, you will have a heck of a time keeping

all the pains straight, won't you? Anyway, welcome to the group. I hope

you will be getting some relief soon. Sue

On Sunday, September 4, 2005, at 09:17 AM, pattyk630 wrote:

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see the

> outside and can't understand all that is happening on the inside. I am

> really looking forward to this group.

[Guest guest]

Hello

Nice to meet you! Yes, I take a ton of medication. I was dx almost two years

ago, but have suffered in silence for about 5 years. I would go to doctors and

it was always something else. I finally couldn't take it anymore and changed

doctors. Soon as I showed him a few knuckles on my hands and feet it was off to

an RA doctor. I just entered a clinical study for humira, I am considered a

methotrexate failure and have been removed from that. I got my third shot today

for the Humira and it seems to be helping - at least I'm walking now instead of

hanging on to everything and everyone and dragging myself along. I have a

friend I work with who take Enbrel and is doing pretty good. I am on light duty

at work - been doing that for over a year. I don't know how much longer they

will let me do this. The practice has over 20,000 patients total and new ones

all the time. The doctors are on staff at hospital and see all newborns, so we

get most of them. Only time will tell. It is so

nice to talk to people who understand, I just hope I can answer all the emails

Patty

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi Patty:

Welcome to the group. You have come to group of very

supportive people, and our moderators find us medical

and drug information, studies, and new research. I

have been a member for several years now and have

found it to be a wonderful place to come because we

all truly understand what each other is going through.

As the saying goes " whine and cheese served here

everyday " , so feel free to vent when you need to.

I am 51, have been diagnosed with RA for 6 years, and

also have Raynaud's and Fibromyalgia. I am married

and have two children, a son 21 and a daughter 18. My

family is great, but it took them a while to

understand what I go through (although never as well

as the people in this group do), and do help me quite

a lot. We have a small farm with horses, chickens,

ducks, geese, and dogs, and love it.

I take Enbrel, Methotrexate, Ultracet, Mobic, Folic

Acid, Milk Thistle, and Glucosamine for the RA, and

for the Fibro I am on Skelaxin and Trazadone. I also

take an anti-depressant, blood pressure med, and

asthma med. Whew - never did I think in a million

years I would have to take so much meds.

You have a very busy job - are you able to keep

working? I hope that your doctors have started you on

medication - I am sure you know how important it is to

treat this disease aggressively from the start. Best

of luck to you and keep coming back -

Kathe in CA

--- pattyk630 <babies1@...> wrote:

> I am new to the group, and I thought I would tell

> you a little about

> myself. I am a 49 year old female that feels 100.

> I am a nurse in a

> very busy pediatric practice. I have hypothyroidism

> and started

> having a lot of problems, so I went to the doctor,

> and more doctors,

> and then more doctors. My blood test were off the

> wall for RA, but

> then came a additional problem - hemachromatosis, or

> better called

> iron overload. This also causes a different type of

> arthritis, and

> joint pain. I am looking forward to talking to

> others with RA and

> venting every now and then. My family, husband, two

> daughters, and

> four grandchildren are wonderful and supportive, but

> they only see the

> outside and can't understand all that is happening

> on the inside. I am

> really looking forward to this group.

>

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Hello

Nice to meet you - Thanks in advance, it so nice to have people to talk to that

understand. Patty

tdianaok <tdianaok@...> wrote:

Welcome!

I am glad you found the group. There is great support and information.

I just want you to know that I am here if you need a shoulder. Can't

wait to know you, hugs Tawny

> I am new to the group, and I thought I would tell you a little about

> myself. I am a 49 year old female that feels 100. I am a nurse in

a

> very busy pediatric practice. I have hypothyroidism and started

> having a lot of problems, so I went to the doctor, and more doctors,

> and then more doctors. My blood test were off the wall for RA, but

> then came a additional problem - hemachromatosis, or better called

> iron overload. This also causes a different type of arthritis, and

> joint pain. I am looking forward to talking to others with RA and

> venting every now and then. My family, husband, two daughters, and

> four grandchildren are wonderful and supportive, but they only see

the

> outside and can't understand all that is happening on the inside. I

am

> really looking forward to this group.

[Guest guest]

> My email account was down all day yesterday for some reason and

today is my

> birthday so my wife is prohibiting me from doing any email. Looks like

> there's been some good discussion. I'll try to play catch-up tomorrow.

Ron,

Happy birthday!

B.

[Guest guest]

Ron-

>My email account was down all day yesterday for some reason and today is my

>birthday so my wife is prohibiting me from doing any email. Looks like

>there's been some good discussion. I'll try to play catch-up tomorrow.

Happy birthday! Hope it's a great one!

-

[Guest guest]

On 9/15/05, RBJR <rbjr@...> wrote:

My email account was down all day yesterday for some reason and today is my

> birthday so my wife is prohibiting me from doing any email. Looks like

> there's been some good discussion. I'll try to play catch-up tomorrow.

>

> Ron

Well I hope your wife on your special day was kind enough to say " nice ass! "

Happy Birthday!

--

Pleasure is a nutrient - Mati Senerchia

[Guest guest]

Did the term Toxic Shock ever come up? . . .

Some women who have developed toxic shock after saline

implants have lost limbs! . . . Terribly dangerous!

Have you submitted a MedWatch report?

Hugs and prayers,

Rogene

--- lovethypup <ddogs@...> wrote:

> I just joined this group......I am 46 years and I

> had gotten saline

> implants when I was 37 years.....after getting the

> implant....I

> developed seborric warts on my chest and hands....I

> was always tired

> and after 7 years I got a systemic infection.....had

> emergency surgery

> and removal of the implants.....the Dr. that removed

> them later asked

> me if I knew haw sick I was and told me I could have

> died with the

> infection in my system.....All I know is that I was

> so sick.....I

> still get tired and have pain in my joints.

>

>

>

>

>

>

[Guest guest]

Hi. It is good to hear from you. How long have you been explanted.

It sounds like you may need to do some detoxing and cleansing of your

body systems to get you back to feeling good again. We have alot of

good information on ways to accomplish these cleanses and detoxes on

this site. Welcome and feel free to ask any questions that you might

have!

Hugs, kathy

> I just joined this group......I am 46 years and I had gotten saline

> implants when I was 37 years.....after getting the implant....I

> developed seborric warts on my chest and hands....I was always tired

> and after 7 years I got a systemic infection.....had emergency

surgery

> and removal of the implants.....the Dr. that removed them later

asked

> me if I knew haw sick I was and told me I could have died with the

> infection in my system.....All I know is that I was so sick.....I

> still get tired and have pain in my joints.

[Guest guest]

I was diagnosed this year at age 41. I actually use to do yoga all the time but

since my wrists were so bad, I had to stop. NOw that I feel better from taking

Humira injections I recently started lifting weights again but I'm afraid to do

yoga because of my wrists. As far as the diet goes, who knows.

august_born <august_born@...> wrote:

Hi,

I'm 32 and found out that I have RA about 9 months ago. Being this

young with arthritis is really fustrating. I'm trying to find out a few

things that may help me out.

Besides medication does anyone do anything like practice yoga or

changed your diet that seemed to have made some(even if small)

improvement in your condition?

Does anyone know of a good rheumatologist in New York City? The one I'm

using is OK, but I just get the feeling all he wants to do is push

drugs down my throat.

[Guest guest]

I've done a lot of yoga in my life, but had to replace it with the

gentler Qigong, which I highly recommend!

When I was first diagnosed with RA I went on an elimination diet (you

can find info. on the web) to help determine food sensitivities. I

learned that I was sensitive to dairy, wheat, and coffee.

Swimming has been a terrific help, and so has acupuncture

and massage.

Herbal remedies and homeopathy were no help at all.

While I have lots of alternative things going, my best help has come

from the meds.

Sierra

--- In , " august_born " <august_born@y...>

wrote:

>

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

[Guest guest]

How did you and your doctor decide it was time for a biological med?

Sierra

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

>

>

>

>

>

>

[Guest guest]

hi

i know of one great rheumatologist in nyc , her name is dr. paula marchetta 36th

and park ave

my; hip plan doesn't cover her, my own rheum is a dr. lipshitz, on 79th btwn 2nd

and 3rd, i like him, but he too is an rx dealer. i think they all are because

there is no remedy , only an offering of pain relief. i'm very depressed about

that situation, and looking for alternatives.

i do know if money were no object, i would probably go to marchetta.

august_born <august_born@...> wrote:

Hi,

I'm 32 and found out that I have RA about 9 months ago. Being this

young with arthritis is really fustrating. I'm trying to find out a few

things that may help me out.

Besides medication does anyone do anything like practice yoga or

changed your diet that seemed to have made some(even if small)

improvement in your condition?

Does anyone know of a good rheumatologist in New York City? The one I'm

using is OK, but I just get the feeling all he wants to do is push

drugs down my throat.

[Guest guest]

Welcome. Sorry about your diagnosis. I was diagnosed when in my early

20's and I'm now 51. I know how it feels to

be so young and get this diagnosis. I've had the best relief with

water therapy. Swimming keeps my joints mobile and

strong. It also reduces pain and inflammation. I've changed my diet

by eliminating meat, which has changed my digestive

system for the better. I've eliminated most sugar from my diet and

the main foods I eat are fruits, veggies, and fish.

There are many foods and herbs that fight inflammation, which I

incorporate into my diet.

Any rheumatologist is going to try to put you on meds. Research shows

that the earlier treatment is started, the less

damage done. My drug of choice is Enbrel. I was wheelchair bound

before starting Enbrel. I tried alternative treatments

for several years, and all I got for it is eroded joints, so I

combine alternative and traditional.

a

On Oct 6, 2005, at 3:35 PM, august_born wrote:

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out a

> few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The one

> I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

[Guest guest]

Hi,

I just signed in a couple of days ago. I am 34 and was diagnosed in

July. So, I know your frustration. I have been so healthy all of

my life that this is very overwhelming. I would have to be dying to

go to a Dr. in the past. Which explains why I didn't go to one for

3 full months of pain and agony. I figured it would go away on its

own. I tried heat, cherries and cherry juice, eliminating

aspartame, shoe inserts for my feet, accupuncture, anything I could

find. Nothing helped.

The amount of drugs (not to mention the expense) is amazing.

However, my life seemed unlivable for about 3 months. I just

started to get pain in March, about 6 weeks after the birth of my

son. If I didn't get the meds I don't know how I would have

survived. My Dr. is suggesting that I learn to accept this disease

and fight it as agressively as it is attacking me. Their plan is to

all but stop the RA and prevent any damage and disgurement. I

already have a small amount of joint damage in just about 16 weeks,

pretty scary. I figure I have about 60 years to live and want to be

as active and healthy as possible. If that requires meds, so be

it. I figure I can be in pain and depressed while not taking the

meds. Or take them and get on with my life as much as possible.

She put me on Arava immediately and Enberel within 2 weeks.

Sometimes I feel like a loser and still imagine myself at about 16

years old never even imagining this as a part of my life. But the

meds have given me my life back. I am basically back to normal with

just a little pain in my elbows and wrists. I feel blessed to have a

Dr. that didn't make me " wait and see " . She just hit the ground

running. I guess I am saying, if you are in pain, take what they

offer. I am greatful for all the people out there working on meds

and cures. This disease sucks at our age but we have long lives

ahead of us to fight it. Good luck. Abby

--- In , " august_born " <august_born@y...>

wrote:

>

> Hi,

>

> I'm 32 and found out that I have RA about 9 months ago. Being this

> young with arthritis is really fustrating. I'm trying to find out

a few

> things that may help me out.

>

> Besides medication does anyone do anything like practice yoga or

> changed your diet that seemed to have made some(even if small)

> improvement in your condition?

>

> Does anyone know of a good rheumatologist in New York City? The

one I'm

> using is OK, but I just get the feeling all he wants to do is push

> drugs down my throat.

>

[Guest guest]

Hi, .

There are many yoga poses you can do without causing stress to your

wrists.

I've taught yoga for many years. If you'd like, you're very welcome to

tell me which poses you're worried about; and I'll let you know if

they'll strain your wrists. Of course, you'll want to be careful with

all your joints; but gentle yoga, tai chi, qigong--whichever you

enjoy--can be very helpful.

Prakasha

On Oct 6, 2005, at 4:46 PM, Mathews wrote:

> I was diagnosed this year at age 41.  I actually use to do yoga all

> the time but since my wrists were so bad, I had to stop.  NOw that I

> feel better from taking Humira injections I recently started lifting

> weights again but I'm afraid to do yoga because of my wrists.  As far

> as the diet goes, who knows. 

>

[Guest guest]

Jeroen,

Welcome! We live in the United States but Belgium is

close to my heart as our Maid of Honor and Best Man

from our wedding live there. Our son, Micah, is 3

1/2 years old and has BPES. We adopted him in May of

this year. All of our children were born in South

Korea. Welcome to our group!

April Eisele, Colorado, USA

Wife to Jon

Mommy to Mira, Micah & Misha

--- jeroenkleinen <jeroen.kleinen@...> wrote:

> Hi everybody,

>

> My name is Jeroen, I live in Belgium, I'm 29 years

> old and I have

> BPES. I have two children, Jens 4 years old who also

> has BPES and

> Tiebe two years old who is not affected. I got to

> know of this group

> while searching the internet for information about

> surgery, since our

> son is about to undergo surgery whitin this year.

> I'd like to get in

> contact and share information with other people who

> know about BPES.

>

> Greetings,

> Jeroen

>

>

>

>

__________________________________________________

[Guest guest]

Hi There.. Welcome to the group. I am Leah from NewZeland with 6 years old

Ethan with BPES. Hes is the only one in our family to have it and i have 3

other children. Take Care and once again welcome

blepharophimosis hello

> Hi everybody,

>

> My name is Jeroen, I live in Belgium, I'm 29 years old and I have

> BPES. I have two children, Jens 4 years old who also has BPES and

> Tiebe two years old who is not affected. I got to know of this group

> while searching the internet for information about surgery, since our

> son is about to undergo surgery whitin this year. I'd like to get in

> contact and share information with other people who know about BPES.

>

> Greetings,

> Jeroen

>

>

>

>

>

>

>