Re: New member questions and proposal

[Guest guest]

> Hello to all!

> I am a new member of this group. My name is . I am a 27

year old

> female with Samter's. My father has Samter's Triad as well. I am

> wondering if any of you know other people who have it who also have

> relatives with it.

> Also, I am wondering if there is any sort of Association,

Institute, or

> Society for Samter's Syndrome as there are for Diabetes and Asthma

and

> other such things. If so, please let me know.

Hello and welcome. My name is Trudy and I have had Samters for

23 years and was correctly dignosed that long ago, thank goodness! In

the meantime I have had many surgeries including Caudel-Luc's and

Insta-Trak FESS, been on prednisone most of my life including

asthma/sinus meds, been in respiratory arrest, and had my life

basically controlled by this illness. You have found the site with

the most information on Samters on the web. There are no

associations, societies, etc. We are it. Along with some posts by

some researchers and medical info pages. Go to our links section and

start reading everything you can then come back and share! There

isn't a lot of info out there and we are trying to remedy that

situation. As for your question about relatives...I have a maternal

uncle who is 82 years old with Samters. As far as I know we are the

only ones in our family. Again, welcome and we hope to learn more

with you! Trudy.

[Guest guest]

Hello and Trudy and all!

I too am a new member of the group, my name is Becky and I'm 34. I've had Samter's for 5+ years now - I had it for one awful undiagnosed year when I became very ill and had no idea what was wrong. Many visits to the Dr and hospital. It was diagnosed when I had the operation to clear and open my sinuses. The consultant said he had never seen anyone so bad and said I could have died anytime. Luckily i have slowly recovered and feel the I have my illness under much better control. I wash my sinuses out at least 2ce a day, take flixonase nose drops, asthma puffers and also montelukast.

I had my third child 2 years ago against my drs and family's approval and advice (at the time)- had to stop montelukast during pregnancy and breatfeeding but otherwise not too bad. I have a beautiful, healthy daughter who was born weighing 8lb 1oz.

My paternal grandpa had this condition too.

I think montelukast(singulair) is excellent at stabalising the condition, but I have truly found the very most important thing to be a strongly positive attitude. I was told I would probably never have a sense of taste or smell again. 4-5 tears ago I had absolutely no sense of smell, 3 years ago, about 10% on and off- - mostly with prednisolone. 2years ago about 30%, last year about 50%. This year I've had my sense of smell and taste for about 90% of the year. Bad times during and after colds or if I feel low and get run down. Then I reach for the prednisolone!!

I thought my life as I knew it had ended 5 years ago, when I had 2 small children and found it impossible to cope. Now I have a much more positive outlook on the whole and realise that life can and does go on. This illness has even been a blessing in disguise as I am now much more spiritually aware, more empathetic and a happier person because I never take the basic things in life (like having a sense of taste and smell) for granted.

I enjoy reading these e-mails and wish everyone the best of luck with their journey through life with Samters triad,

lots of love and light,

Becky xTrudy <iamthezookeeper@...> wrote:

> Hello to all!> I am a new member of this group. My name is . I am a 27 year old > female with Samter's. My father has Samter's Triad as well. I am > wondering if any of you know other people who have it who also have > relatives with it. > Also, I am wondering if there is any sort of Association, Institute, or > Society for Samter's Syndrome as there are for Diabetes and Asthma and > other such things. If so, please let me know. Hello and welcome. My name is Trudy and I have had Samters for 23 years and was correctly dignosed that long ago, thank goodness! In the meantime I have had many surgeries including Caudel-Luc's and Insta-Trak FESS, been on prednisone most of my life

including asthma/sinus meds, been in respiratory arrest, and had my life basically controlled by this illness. You have found the site with the most information on Samters on the web. There are no associations, societies, etc. We are it. Along with some posts by some researchers and medical info pages. Go to our links section and start reading everything you can then come back and share! There isn't a lot of info out there and we are trying to remedy that situation. As for your question about relatives...I have a maternal uncle who is 82 years old with Samters. As far as I know we are the only ones in our family. Again, welcome and we hope to learn more with you! Trudy.

ALL-NEW Messenger - all new features - even more fun!

[Guest guest]

,

If you look back through some of the posts within the last 3-4 weeks there has been some discussion about stating a foundation and/or a website. I think it will happen I am just not sure when.

Rob

Also, I am wondering if there is any sort of Association, Institute, or Society for Samter's Syndrome as there are for Diabetes and Asthma and other such things. If so, please let me know. If not, I am interested in starting one and am wondering if anyone else in this group would like to be involved in doing so.

[Guest guest]

Hi and welcome,

I must say that it sounds like your experiences have made you very

mature and you've done a lot of work educating yourself about the

illness, as have many of us here.

I haven't read all the responses to your post yet but there is

definitely some interest here in starting a Samter's Foundation. I

have been so heartened lately to hear of the interest in it, as it

has for a long while now been a " dream " of mine. I got a bit

discouraged earlier in the year when someone on the list said it was

a " pie in the sky " idea and I sort of gave up the idea for a while.

It is a very fragile dream in some ways but I know that we can do it.

My first thing that I would like to do is set up the organization as

a non-profit in one of the states. That way we could raise money. I

know there is a whole way to go about it, and you have to set up a

board of directors.

I am going to write another email about this as well because I

thought there was someone on the group who knew someone who could

help us set up a non-profit corporation. I know many people who have

started non-profits in the cancer field (I had breast cancer, too)

and they all say the first step is to set up a non-profit, and

everything comes from there.

I also wanted to say that although I believe there are some " natural "

ways to help with Samters, I also had a very similar experience here

as you did trying herbal treatments, etc.

One of the worst actually was acupuncture. My polyps grew so large

during the acupuncture they protruded from my nose. And before that

they were never ever so bad. I know acupuncture is supposed to open

up pathways sort of, but I felt like it was opening up pathways that

were already TOO FAR open, you know what I mean? And a lot of the

herbs definitely made my symptoms so much worse. Some people

suggested that it was because I had to get worse before I got better,

but I was near death at times so I thought, well, how much worse can

this get?

I, too, have found as close as I feel I have gotten to a magic

bullet, which was desensitization (twice), surgery (4 times, but the

first two were before I knew about the desensitizaton, and the third

time was before Singulair) and then Singulair. The combination of

those plus Nasonex spray has really made my symptoms so much better.

Oh, and Advair is the inhaler I use and although I know it has side

effects I love it and feel it has saved my life. That came out also

after the second or third surgery.

In terms of the genetics, my mother and her mother are allergic to

aspirin and my dad had nasal polyps. So I am feel sure I sort

of " inherited " Samters although none of them had Samters itself. My

mom and my grandma have aspirin-induced asthma, though. But they do

not have nasal polyps or any other symptoms of Samters or asthma when

they do not take aspirin. I don't know about other non-steroidal

anti-inflammatories, though. (That's why I don't like it when people

call Samters aspirin-induced asthma, because, well, it's really not

only that in my experience).

Anyway, welcome!! I had talked about having a conference call to

talk about the foundation but we never got it off the ground. Maybe

we could soon.

Lori

[Guest guest]

lori

i am trying acupuncture now, under the advice of my ENT. i have only

had 3 sessions. the first time i went i felt like i took an

antihistimine - i could feel my sinuses open up, the itchy eyes

cleared and i felt much less fatigued. the other 2 times werent as

dramatic, but i was using zyrtec. i will keep you all posted. of

course i am horrified that acupuncture made your polyos worse! i

hopefully will have a different experience.

also, i agree about herbals, etc. my acupuncturist is also a chinese

medicine herbalist, but i have declined to pursue that route. i'm just

too nervous about taking anything when i dont know exactly what it is.

my body just seems to be so sensitive.

jennifer (ny)

>

> Hi and welcome,

>

> I must say that it sounds like your experiences have made you very

> mature and you've done a lot of work educating yourself about the

> illness, as have many of us here.

>

> I haven't read all the responses to your post yet but there is

> definitely some interest here in starting a Samter's Foundation. I

> have been so heartened lately to hear of the interest in it, as it

> has for a long while now been a " dream " of mine. I got a bit

> discouraged earlier in the year when someone on the list said it was

> a " pie in the sky " idea and I sort of gave up the idea for a while.

> It is a very fragile dream in some ways but I know that we can do it.

>

> My first thing that I would like to do is set up the organization as

> a non-profit in one of the states. That way we could raise money. I

> know there is a whole way to go about it, and you have to set up a

> board of directors.

>

> I am going to write another email about this as well because I

> thought there was someone on the group who knew someone who could

> help us set up a non-profit corporation. I know many people who have

> started non-profits in the cancer field (I had breast cancer, too)

> and they all say the first step is to set up a non-profit, and

> everything comes from there.

>

> I also wanted to say that although I believe there are some " natural "

> ways to help with Samters, I also had a very similar experience here

> as you did trying herbal treatments, etc.

>

> One of the worst actually was acupuncture. My polyps grew so large

> during the acupuncture they protruded from my nose. And before that

> they were never ever so bad. I know acupuncture is supposed to open

> up pathways sort of, but I felt like it was opening up pathways that

> were already TOO FAR open, you know what I mean? And a lot of the

> herbs definitely made my symptoms so much worse. Some people

> suggested that it was because I had to get worse before I got better,

> but I was near death at times so I thought, well, how much worse can

> this get?

>

> I, too, have found as close as I feel I have gotten to a magic

> bullet, which was desensitization (twice), surgery (4 times, but the

> first two were before I knew about the desensitizaton, and the third

> time was before Singulair) and then Singulair. The combination of

> those plus Nasonex spray has really made my symptoms so much better.

> Oh, and Advair is the inhaler I use and although I know it has side

> effects I love it and feel it has saved my life. That came out also

> after the second or third surgery.

>

> In terms of the genetics, my mother and her mother are allergic to

> aspirin and my dad had nasal polyps. So I am feel sure I sort

> of " inherited " Samters although none of them had Samters itself. My

> mom and my grandma have aspirin-induced asthma, though. But they do

> not have nasal polyps or any other symptoms of Samters or asthma when

> they do not take aspirin. I don't know about other non-steroidal

> anti-inflammatories, though. (That's why I don't like it when people

> call Samters aspirin-induced asthma, because, well, it's really not

> only that in my experience).

>

> Anyway, welcome!! I had talked about having a conference call to

> talk about the foundation but we never got it off the ground. Maybe

> we could soon.

>

> Lori