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StefanieAshley

My spouse has Scleroderma

5 posts in this topic

Hello, my spouse was diagnosed with Scleroderma when he was 10yrs old. He is now almost 30 and they told him he wouldn't live to see 25. Though he is quite active for being in as much pain as he is, he is slowing down significantly lately. I guess my question is, what is the average expectancy for someone with this disease? He is planning on going to Texas this summer for some new treatments basically as a guinea pig and I will let you all know how it goes. I'm very lost right now because all he tells me is that he feels like he is dying and I can't stand the thought of not having him.

 

Any support or answers would be great!

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Hi and welcome!

 

You're asking the million dollar question! Oh how we would love to know the answer. However, there just isn't one. Each person is so different, has different symptoms, severity of illness, that it is impossible to calculate.

 

What type of Scleroderma does he have? What symptoms is he dealing with?

 

You've come to the right place for support. We have a terrific bunch here. Maybe you can convince your hubby to visit the site as well. It might be encouraging for him too.

 

Hang in there! :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Stefanie,

 

I'm very sorry your husband has scleroderma and that he is feeling so bad. I'm guessing your husband is going to the major scleroderma center in Houston, in which case you can rest assured that he will get the best care possible for the disease.

 

We're here for you. We know how rough it can be, and also how extremely difficult it can be not knowing. Scleroderma is most well known for being a roller coaster ride, with unexpected worsening and improvements, too. Rest assured that we will be here for you, now and always, so you do not have to face the uncertain future alone.

 

Would you like some warm hugs? Here's some from all of us.

 

:emoticons-group-hug:


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 Stefanie,

 

Welcome to these forums to you and your husband!

 

Firstly, congratulations to you both for dealing with Scleroderma for the past 20 years (I'm a comparative newcomer having only been diagnosed for the last 22 months.) I'm sorry your husband has Scleroderma and is suffering so much pain and I can really understand how worried you're feeling.

 

Unfortunately, this unusual disease manifests itself in so many different ways and affects every sufferer differently so it's very diffcult to accurately predict the course of it. I've included a link to Living With a Chronic Illness which I hope will be helpful to you.

 

However, the good news is that now that you've found our forums and joined our community, you'll find a wealth of friendship and support for both of you. Do keep posting and let us get to know both you and your husband.

 

:emoticons-group-hug:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Stefanie

 

Welcome to the forums!

 

Life expectancy eh? Well I know people who are still living after many years with scleroderma as well as having known people who didn't survive long.

 

I have a dear friend who has been told they have a short life expectancy if treatment is not successful, we're both of the same opinion that it's all about quality not quantity. Part of my friend's medical team wanted a five week stay in hospital which my friend declined because if they have limited time they don't want to waste five weeks of it in hospital.

 

I have diffuse systemic sclerosis with heart involvement, last year they told me if treatment didn't work my long term prospects were grim but guess what...treatment worked! It seems that with scleroderma anything is possible.

 

Pain is a very relevant issue for me at the moment and how it's managed has a massive impact on quality of life. Thankfully I now have a great general practitioner who is working with me to find the right combination to make my pain bearable. If your husband doesn't have doctors working to do this for him find them. It seems that sometimes the medical profession overlook pain, concentrating on the symptoms that can kill us with a view to extending our quantity but often what we want is quality.

 

I have no doubt that you improve your husband's quality of life by just being his wife.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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