About

Scleroderma Angel Foundation Copywrite

This (document/video/web site/logo) including design, text, graphics, the selection and arrangement thereof, are Copywrite 2011 by Scleroderma Angel Foundation, Inc. (SAF). ALL RIGHTS RESERVED. Any use of materials including reproduction, modification, distribution or re-publication, without prior written consent of SAF is prohibited unless clearly attributed as “provided courtesy of Scleroderma Angel Foundation, Inc.

The Scleroderma Angel Foundation is a group of patients, loved ones, concerned citizens and providers dedicated to the goal of increased awareness of Scleroderma and related disorders. The aim is to promote awareness through education, and public discourse with an attitude of conviction and purpose that is essential to dealing with these extremely difficult disorders. Dr. Greg Borstad

Scleroderma is a chronic often progressive, disabling and sometimes fatal autoimmune disease.

Between 300,000 and 700,000 in the United States suffer from Systemic Scleroderma.

The cause of Scleroderma is unknown – there is no known cure.

Scleroderma Angel Foundation is a 501 (c) (3) nonprofit created for the patient and by the patient.

Our Vision: Bringing HOPE to all people affected by Scleroderma.

Our Mission: To educate and promote awareness of Scleroderma worldwide.

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12 Responses to About

  1. maryanah gray says:

    My mom got diagnosed with scleroderma bout one year ago, she is supposed to go to the mayo clinic in Florida. The doctors in indiana know little bout this disease. We wer wondering where should we start, and are we starting in the right place (fl)? Any feed back would be greatly appreciated. Thank you.

    • Roxanne Bodean says:

      The cleveland clinic in cleveland ohio has specialist it would be closer I was diagnosed at age 19 was given ten years to live ive had it for almost thirty now, not without complications, God bless

    • sorry to take so long to get back to you. I will email you to see if you want to join us on facebook in Scleroderma Angel chat group I am Ann Havelock Pres. Scleroderma Angel Foundation

  2. Roxanne Bodean says:

    How can I join, I have scleroderma for almost thirty years now would love to join

    • sorry to take so long to get back to you. I will email you to see if you want to join us on facebook in Scleroderma Angel chat group I am Ann Havelock Pres. Scleroderma Angel Foundation

  3. Amy Stertman says:

    Hi,
    I really need some help and don’t know where to turn. I have been diagnosed with morphea( localized scleroderma )since about age 7 and it was on my hips and low back and right calf it was dormant for most of my life.in my early thirties I got a new spot or two but ignored it ,I have had Raynaud’s phenomenon for about 8 years ,also G.E.R.D gastritis,rheumatoid arthritis,tendonitis,fibromyalgia since age 14 ,severe migraines (age14) which are now intractable and disabling ,sjogrens,weight loss,malabsorption ,hypocalcemia ,hypokalemia,hypothyroidism,anemia,vasovagal syncope,tachycardia ,hypoglycemia,allergies,gluten allergy,milk allergy,stage 4 endometriosis of ovaries tubes,bladder,ureter,vagina,anterior and posterior cul de sac ,broad and uterus accrual ligaments,rectum,intestines, severe pelvic and intestinal adhesions ,appendectomy,7 pelvic surgeries for menorahhagia,(2 times so severe I needed blood transfusions ), ovarian cysts ,endo ,adhesions, 2 -5 cm cysts one on each ovary I had to have the ovaries removed ,before that I had an endometrial ablation for the severe bleeding that failed then a hysterectomy and eventually my last ovary putting me into surgical menopause at age 31.i am 39 now and on SSDI for intractable migraines and fibromyalgia. I can’t take hormones because of the migraines and endo.i recently developed vaginitis and LICHEN SCLEROSIS along with a rapid growth of my morphea lesions .every time i take a bath I break down and cry because they are everywhere and more than last time.the ones on my hips have tripled in size,I have a band across my lower back and some other spots on lower and upper back ,my abdomen has many more,my thighs are getting some in front ,in back my thighs are covered more every week,a lot both thighs ,my arms are getting spots,
    About 3 years I went to see a scleroderma specialist in lacrosse wi who said basically everything was due to my fibromyalgia .he didn’t listen to me,spend time I didn’t like him,recently after ignoring all these new lesions I finally showed my doctor who referred me to the same dr( it’s the only one around here ) I forgot to mention most of the lesions the ones on my trunk are red inflamed and have a reddish rim.they itch like crazy.i used to have oily skin and hair now I am so flaky and dry my fingers split open and bleed.my fingers also swell and I think I have systemic scleroderma.i have thought this for years.
    Back to the dr. I went the second time he didn’t even look at ANY lesions except one on my hip ,I have never had lung tests done,nail capillary? My rheumatologist in Madison said I had some slight nail changes just from looking with a magnifier this was about 8 years ago,,so this dr I kept showing him pics of my swollen hands fingers asking about all my illnesses,I have raynauds,it’s not related I got no explanation I was there for less than 10 min and I drove an hour he referred me to 4 other doctors which I’ve already seen dermatology,?rest were,I went to check out had receptionist make sure I saw them all( drs) and I did,I didn’t want to come all the way back 2 hr total I don’t drive that far I have to get a ride,
    I was so upset. Forgot he ordered blood work i left with my mom.i read his report online about how ungrateful I was he took so much time to set up these referrals and I blew them off .this was sent to my dr.i am so tired of doctors and don’t know where to turn . What do you think after reading about my symptoms.i also have depression surprise and complex PTSD. Does anyone know a good doctor in my ares .I go between just living with it then I think I should fight I don’t know.please someone help.

    • Amy, wow I am so sorry for your pain/suffering and lack of medical compassion. You shouldn’t be treated that way. I think you should join our SAF (Scleroderma Angel chat group) on facebook for some good information and doctor referrals. We have over 1475 people in our group from around the world who share and interact with each other in positive ways. Angel hugs and healing prayers

  4. Amy Stertman says:

    Hi
    Thanks for your kind words I appreciate you reading and replying to my long email, do I have to join Facebook to chat or can I do the same on twitter? : )

  5. Danielle Sanford says:

    Hello, My nine year old daughter was recently diagnosed with Scleroderma. She has spots covering the lower back down both legs her arms and her stomach. she also has rheumatoid arthritis overlapping the sclero She has been functioning with little movement in her wrists and ankles. she has a lot of inflammation. We are waiting for a biopsy in February. I just want to learn as much as possible before our next visit to the rheumatoid doctor. All the information I can get. Please give me some direction

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