meeta

Seeking Info On Scleroderma/dema Gut Problems - Please Help!

22 posts in this topic

PS Folks, I forgot to add in my post, that I hope to be able to spend some time here at some point offering encouragement and support to others who are dealing with any of the various manifestations of sclero-type disease, or caring for someone who is. I don't want to seem like someone who just rocks up every now and then to get support for myself without ever giving anything back!

 

It has certainly been a source of help and comfort to me to be able to visit here and just to know that there are people listening who understand what it's like going through these kinds of situations, and that no one need be alone - it is very important to realise this. It has only truly dawned on me just HOW important it is to feel "not alone" in life since Aadhaar's diagnosis and all which has followed on from that. I suppose if every cloud has a silver lining as they say, then the lining in this one is that I have become a better person by having to drop some of my pride and determination to cope with whatever comes my way under my own steam.

(probably Aadhaar would say the same thing)

 

This is just too big for that sort of attitude to be sustainable or helpful... and every day I discover how wonderful other human beings can be, and how caring. It is a humbling experience when complete strangers offer you their heartfelt good wishes or go out of their way to advise and assist you or just to "bear witness" to what's going on for you.

 

So perhaps not just at this moment ( coz I'm a bit off the planet right now to be honest!) but when things have hopefully settled down a bit I can spend some more time here repaying some of the kindness and support that has been shown to me. I would like to do that very much.

 

Love Meeta

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Dear Meeta,

 

I'm very glad you are finally beginning to get some answers for Adahar's illness. We have a page on our site about Scleromyxedema. I hope you find it helpful. And here is some treatment information from that page:

 

IVIG and Thalidomide Combination is an Effective Novel Therapy for Scleromyxedema. In the majority (83.2%) of cases, an abnormal paraproteinemia is present. IVIG and thalidomide combination is an effective novel treatment of scleromyxedema with systemic involvement and associated light chain monoclonal gammopathy. Petros Efthimiou. ACR Conference Oct. 2003.

 

Give some warm hugs to Adahar for us, of course!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Dear Heidi and Shelley

 

Once again many thanks to you guys for your invaluable help and support.

 

I had discovered the info about scleromyxedema ( I'll spell it right this time!) on this site - this site is an absolute mine of information and just a fantastic resource, and also looked at a few articles/case studies on the net which are obviously written by doctors for doctors as it is daunting trying to wade through all the terminology etc.

 

Anyway, it is encouraging that there do appear to be a couple of treatments that have had good results for many patients :)

 

It will probably take a few more days before the team of doctors working with Aadhaar come to us with a more definitive diagnosis and options for treatment. We are in the public health system so I don't know what is available or what is involved cost wise but I guess we'll cross that bridge when we come to it.

 

A few nights ago I was watching a doco which was about some of the people who live in impoverished countries with basically zero medical care and I thought, what would it be like for someone with scleroderma / dema/ etc. in that situation? It would be just terrible.

 

I'm so grateful that we live in a country which DOES have a public health system, imperfect as it may be at times!

 

Another positive is that his case being so unusual has really got them interested, and all of the different specialists are working closely together and being extremely thorough in pursuing all avenues of exploration to try and understand as much as possible about what is actually going on.

 

Also, they are being very inclusive of Aadhaar and myself in this process and especially going out of their way to explain to him why tests are being done, what lines they are thinking along and so forth.

 

I can see that this is really helping him to feel that he has some empowerment in this situation and is exactly what has needed to happen, as up until this point it hasn't been the case and there has been little or no consultation between different doctors who have seen him, and little or no meaningful communication from doctors to him, which has been making him feel "out of the loop" so to speak.

 

Now he feels like he has got a whole dedicated team of experts working alongside him so that is really GREAT and makes him feel much more supported than has been the case prior to this.

 

So that is all good! Now we will just have to be patient while they figure out what they think is happening and what we can do about it.

 

I will let you know how it all goes and yes I will DEFINITELY pass on your big hugs and best wishes to Aadhaar.

 

Thankyou so much from both of us

 

Love, Meeta

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Hi Meeta,

 

Uh, make that hugs to Aadhaar, not Adahar. DUH. :blink:

 

On behalf of our entire volunteer team, thanks for your kind words about our website, Meeta.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi again Meeta,

 

Wow! It really does sound like your husband is getting GREAT care! I am so glad that the doctors are consulting with one another and with both of you! How important it is for the patient to feel as if they are part of the team. Kudos to your doctors for realizing that! Just know that we are all pulling for you both!

 

Warm wishes,

Heidi

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Meeta,

 

You and Aadhaar sound like wonderful people who will find a way to make a good life once things get under control again. I will keep you and the team of doctors in my thoughts. Keep us up to date on the progress.

 

xoxo emmie

PS I agree--this site can't be beat for it's wealth of information and supportive, caring people! You fit right in.

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It is so encouraging to hear such thoroughly documented and positive experience with a public health system as I am also dependent on similar resources. As the others have mentioned, it is obvious that a big factor in a good outcome is having close support from family members. I am so sorry Aadhaar must go through this, but he is lucky to have you as a partner and friend. You and Aadhaar are lucky to have each other. And we as forum members are lucky to have you share your experiences.

 

hugs,

 

jefa


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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