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It's Rare Disease Day!

Feb 29, 2016 7:58 AM

Does anyone else have a rare disease?

CRPS was only considered rare after 2014! I've had it since 2013 and it's hard work! Does your rare disease have many treatment plans or is it limited?

Feb 29, 2016 8:01 AM

I have CREST syndrome disease. No known cure. No specific meds. I am their Guinea pig.
What is CRPS?

Feb 29, 2016 8:07 AM

Man I have heard of CREST and it's not a fun disease. I'm sorry you have to deal with that one!

CRPS is complex regional pain syndrome. It's an auto immune disorder where your nerves send signals to your brain saying you're in pain in places where there is not a cause for pain. Abnormal inflammation is another thing that happens to a lot of CRPS patients. It can attack organs inside the body as well as full body pain on the skin. There's fewer than 200,000 cases a year.

Feb 29, 2016 8:30 AM

I have what they call tactile aloydynia where the gentlest touch can hurt really bad. Half these diseases I have never heard of.

Feb 29, 2016 8:32 AM

I understand where you're coming from Wellstuffit! Allodynia is a symptom of CRPS and it's not cool! All my clothes hurt me as does my hair. I don't hug my friends and family because it's too painful to touch.

Feb 29, 2016 8:41 AM

I also have what's considered a rare or "uncommon" disease. I have bilateral keratoconus which means I will loose sight without a corneal transplant. Left eye is being done first cause it's the worst. Right eye in the future. I was also diagnosed more recently with idiopathic intracranial hypertension or pseudotumor cerebri.

Feb 29, 2016 8:45 AM

From the Internet:

"Rare diseases are diseases which affect a small number of people compared to the general population and specific issues are raised in relation to their rarity. In Europe, a disease is considered to be rare when it affects 1 person per 2000. A disease can be rare in one region, but common in another."

Feb 29, 2016 8:45 AM


"80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative."

50% of rare diseases touch children.

Feb 29, 2016 10:52 AM

I have crps nearly full body and eternally, and I hnabe never met one person in real lfe with this(Even while pt and the hospital).which is why Im glad I habe this app.

Feb 29, 2016 12:47 PM

Jenna, my CRPS/RSD is nearly full body as well and there are times when I have feelings of that God aweful pain on the inside. It's a hideous disease and I feel really bad for anyone who has it. I was diagnosed by two different neurologists.. I had nerve conduction studies done by both and the second one I had only gone to for a second opinion. Well, ended up that he had the same diagnosis for me. 💕🙏🏻🌻

Feb 29, 2016 3:13 PM

Meganblondie- thank you for saying what you did about CREST! You are the only person ever, that has heard of it! CRPS sounds very similar to what I go through. I have the R - rhenaulds & the S - scloradoma

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