What Do YOU Want To Know About Scleroderma?

Lazy, Crazy Or Smart?

I don’t care, I just want to know:

What do YOU want to know about Scleroderma?

I have had scleroderma for 20 years.  I have the opportunity to answer questions in a Twitter Chat about scleroderma and write a guest post about scleroderma the Treatment Diaries Blog.  There are great organizations that do not get the same sexy publicity as some diseases, but they provide excellent resources and frequently asked questions.  So, rather than reinvent the wheel, I want to know what you want to know, about  what scleroderma is like from a patient’s perspective.

I don’t have all the answers, but I do have a truckload of answers, stories and adaptations I have made to make life with scleroderma manageable for me.  I want to know what I can do for YOU (patients, family, caregivers, friends, medical students- anyone who wants to know) about scleroderma from a patient’s perspective.

No topic is off limits.  No, I will not dispense medical advise.  But please ask me something you want to know about experience with scleroderma or related symptoms.

This is not just limited to scleroderma patients.  After starting my blog in 2009, I realized after talking with patients with different diagnoses, that scleroderma patients shared many of the same symptoms as rheumatoid arthritis, crohns, diabetes, lupus and yes, even cancer.  One thing we all share universally as patients is the experience of loss that causes grief and depression.  Another shared experience: The people we who love us that watch helplessly as we fight for our lives.  We watch them, watch us and it is painful for both.

I have a limited amount of time in an upcoming chat with Treatment Diaries on March 5 and I want to answer YOUR questions.  I don’t want to answer questions I think you might want.  I want to know what you want, so I am asking for your help.

Here is why:  Have you ever had a picture taken of you and after printing it or seeing it on screen, you see things in that picture you had no idea were there?

I have been in the picture with scleroderma for 20 years.  I may have something useful for you that I remember from my intial diagnosis that may be helpful to you, so ask.  I was diagnosed 18 years ago and I had to find answers through trial and error.    Yes, I have questions to  answer, and be sure to watch for my upcoming post on Treatment Diaries’ Blog.  Right now, I am asking you: What do you want to know?  Please post questions in the comments section.  There is no limit to the number and if a question is not answered in the Treatment Diaries Chat Tuesday, March 5, I will do a follow up post to answer them.

Remember, no medical advice.  If you would like to know what Scleroderma is and frequently asked questions, please visit The Scleroderma Research Foundation by clicking here.  They have the clinical answers.  I have the patient’s perspective.

Thank you for helping me and Treatment Diaries raise awareness of scleroderma.  Patients are living longer because of the breakthroughs in research.

Please comment and ask a question.  I want to know what you would like to know from a patient’s perspective about scleroderma.

Check out these foundations  AFTER posting your question.  GO! NOW! DO!  Thanks:-)

Hmmm… Did my post seem repetitive?  Good, then you were paying attention!  Now go ask a question:-)

“In the dictionary under redundant it says: See Redundant.”  – Robin Williams

The Scleroderma Research Foundation

Bounce to a Cure

Project Scleroderma

Treatment Diaries

Federation of European Scleroderma Associations

The Scleroderma Foundation

The Scleroderma Care Foundation