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TOPIC: A comment on scleroderma

A comment on scleroderma 01 Feb 2015 02:27 #3286

  • fas
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Somebody posted the below comment on the page with my scleroderma article, which reads as follows:

What we plan with thoughts and actions for our future so we can enjoy retirement/older age, right? Life can change drastically when a rare, incurable disease such as Systemic Scleroderma attacks our bodies without warning! My life started changing in Fall 07 in my hands, progressing fast to include weak/painful muscles, swelling, loss of range of motion and depression until 3/30/09 diagnosed with Systemic Diffuse Scleroderma which no one has ever heard of until diagnosed and adding insult to injury, neither have most doctors, leaving patients to fend for themselves on how to find treatment for symptoms because Scleroderma cannot be treated as yet. Most Scleroderma patients look normal in appearance but the damage is extensive on the inside of our bodies, stage 4 kidney disease, hiatal hernia, pulmonary fibrosis, aneurysm in heart, GI issues, skin changes and Raynaud’s in hands feet are just a few of my Scleroderma challenges. I am one of the more functionable patients and grateful I have doctors who care and support from Sweetheart, family and friends. Some patients don’t have either doctors nor support and rely on facebook Scleroderma chat groups for advice, love and support from people who relate and understand what they are experiencing. My life has changed dramatically from 5 1/2 yrs ago and I am grateful for my Scleroderma journey because the more I reach out to others the more rewarding my life has become. I am a patient advocate helping to educate and promote public and medical awareness of the desperate need to recognise Scleroderma as the life threatening disease it is. Scleroderma was first documented 260 yrs. ago, now we want awareness to help alleviate the horrible suffering this disease causes physically, mentally and emotionally. Please help. EMILL:kingsleymary37@gmail.com



This looks and reads very genuine, but I have to say, I am daily deleting 5-10 applicants to join either one of my websites, who are most likely spammers, just looking for a chance to unload their garbage. Fortunately I have ways to stop them- maybe Mary Kingsley applied too and got deleted by mistake.

I do not know.

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Board moderator and Site-owner. I still regret the day I started analysing the prospects of MacroPore (now Cytori) back in 2004- a left-over from the tech-bubble at that time from the century change in my portfolio- and became addicted to Cytori´s fat cell technology. :cry:
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