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 Expert
Posts: 3815
   
Location: The best kept secret in TX | June is Scleroderma Awareness Month.
As many of my BBs know my little one was diagnosed last year with Pediatric Limited Systemic Scleroderma with C.R.E.S.T. Syndrome. She has many difficulties from this life long disease including: Gastro intestinal problems with digesting food for nutrition absorbtion, hardened skin on the outside of her body, hardened skin in her throat that makes choking very easy, joint pain and swelling, Nerve pain, numbness in her legs occasionally that cause her to fall down, and Raynaud's Phenomemnon which cuts off blood circulation to her hands and feet when exposed to any type of cold including A/C in the summer.
Patients usually develop symptoms over years and get a new symptom every two years or so. She is only 3 in August. There are currently no known treatments for Scleroderma itself. She will develop internal problems such as kidney, liver, and eventual heart failure. The body over produced collagen and will eventually harden her internal organs. Most patients will die while waiting on the transplant list. There is no cure. There are treatments for the symptoms once they appear but no way to prevent them from appearing or slow them down.
Currently there are no Rheumatologists in our area with enough experience to treat that will see her as a patient because of her age. We have tried many medications to help with her symptoms and none have allowed her to be the spunky full of life child that she is.
Scleroderma is an autoimmune disease that affects over 100,000 people in North America Alone. There is no known cause or cure currently and funding is very limited. The key to raising money for research is being aware that this disease even exists. Help me spread the word about this hard word but even harder disease. Most people look at me like I have two heads when I tell them she has Scleroderma or they reply with: "But she doesn't look sick to me..."
I know there have to be more patients out there like my Little One. Will you take the pledge in telling at least one person about Scleroderma?
  Pledge here: https://www.thunderclap.it/projects/70292-world-scleroderma-day-2018 |
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 Country Fried Chicken Gal
Posts: 7697
 
| I have a good friend with Scleroderma and Raynaud's. Prayers for y'all!
Edited by palgal 2018-06-06 1:06 PM
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 A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | Hugs and prayers for your little one, I know that your heart breaks a little at a time when your baby hurts.   |
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Expert
Posts: 3815
Location: The best kept secret in TX | Thanks guys!  |
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 Shelter Dog Lover
Posts: 10277
| Done, hugs and prayers |
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Go Get Em!
Posts: 13503
Location: OH. IO | I don't fb,or tweet,lol.But please know my prayers are always with you and your daughter,it has to be emotionally exhausting for you.Hugs for you all. |
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  Fact Checker
Posts: 16572
Location: Displaced Iowegian | Lots of hugs and prayers for you and your sweet child .... I tried to share, etc but ran into problems ..... will try again later....FB is NOT liking me today ..... LOL |
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 My Heart Be Happy
Posts: 9159
Location: Arkansas | Hugs and prayers to you and that sweet little girl, as always
Edited by Chandler's Mom 2018-06-08 1:08 AM
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