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Our juvenile conference attendees share the secret! Anaheim!! 2014 will be right across the street from Disneyland!!
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Scleroderma can strike at any age, but because the disease is so rare, it can take years to be diagnosed. So, how old are most people who are affected? Find out. #hardword
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Tina Pesillo
· December 18, 2017
Scler what? Was my first reaction as I was told I had this disease. Seriously how can I have something I can’t even pronounce? Well unfortunately my diagnosis was just confirmed and there is no lo...nger any degree of doubt.

Since first hearing the word Scleroderma six weeks ago I began researching to educate myself and on some level to brace myself.

What I learned was this is not a well known disease and sadly information is difficult to come by!

I am however thankful for this site and the knowledge that there are support groups is a tremendous help.

From this moment on my life will be dedicated to joining in the effort to bring awareness with the ultimate hope that a cure will be found in my life time yet being at peace in knowing that it will ultimately help future generations.
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Nola Martin
· September 13, 2017
I was diagnosed with Scleroderma 8 yrs ago. It has affected my lungs, heart and GI tract. This is a life altering and devastating disease. Many people look at me and say, "you don't look like anything... is wrong with you". Well I was taught to never judge a book by its cover and this disease is a perfect example of that. It effects many people in many different ways. All of the signs aren't always visible and some are, if you take the time to look and ask questions. My symptoms weren't always visible but if you take the time to look closer, you can see the subtle changes occurring on the outside. The more pronounced once are going on inside that cannot be seen by just looking at me. See More
Patricia Borrero
· September 18, 2017
I miss you Dr. Fischer. I'm doing ok. Living in Ca. moving back to Co. next year. Can't wait to have you back as my Doc. You have saved my finger. Best to you and your family.
Brian N Penny Shamblin
· October 12, 2017
I have scleroderma also n I just found out this year n I am already having lost of trouble with my kidneys n gastrointestinal issue any ideas for natural ways to help
Elvira Montenegro Favela
· January 10, 2018
I was bit by scorpion today! !and I have scleroderma! !what should I do? ???
Maddy Jo Katz
· December 20, 2017
My uncle had the disease, and passed away! 8/3/14! I am a HUGE advocate and want to help others as much as possible!!
Kay Carrigan
· May 11, 2016
When i was 6 years old i was diagnosed with scleroderma. For years i battled with test drugs n chemotherapy. Til i was about 10 or 11 my scleroderma went into remission, now i am 25 years old..

When ...I was 13 years old i have had reconstructed surgery on my hole right side of my face. I'm scared that every day my scleroderma will come out of remission.

Its hard i am the only person i know who has this and i have no one to talk to that can relate to me in any way.
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Teddy U Correia
· July 31, 2016
I've been reading your posts for awhile now. It really helps to know that you are not alone in your fight against this disease. My daughter was diagnosed with Mixed Connective Tissue disorder. She has... been suffering from the age of sixteen. It took numerous doctor visits and lots of research on our part, for her to be finally diagnosed. She has a combination of Systemic Lupus, Scleroderma and Rheumatoid Arthritis. Of the three, the Scleroderma is the most active.It's very sad to see how much her features have changed over the years. She is in great pain most of the time. There were many times that she's been very close to death,and we were often told to expect the worst. Our family prays a great deal and I am convinced that it's only the power of God that has her here still. The worst part of all of this is that she lives in Guyana South America and I live and work in Canada just to be able to cover her medical bills which are astronomical. Whenever she gets a severe flare up, I try to go and be with her, but sometimes I can't afford to as I am the one who has to take care of her. I pray that one day very soon, there will be a cure. See More
Robert Gorski
· July 16, 2014
I've been watching your profile on Facebook for quite some time now but never wrote anything.
I admire your work, you inspire me and you have a place in my hart. You have also been there for me when ...I needed information and some guidance/support. You were the only one who sent me such useful information by mail 10 years ago, to Poland. And I never said thank you…
About me. I’m from Poland and were diagnosed with Morphea/linear scleroderma 10 years ago at the age of 24. I guess I had much more luck than many of you who struggle everyday and keep ‘fighting’ this disease. But I felt it too, so I can imagine what this disease can do. I’m also suffering other skin problems for almost 20 years.
I can say it has changed me as a person, for the better.
What else I can say, I wish you all good luck. Love and light to you all and may your biggest dreams come true. I really would like to visit one of your local chapters during my trip to the US in September, but not sure if I will have an opportunity.
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Nadia Shireen Siddiqi
· January 6, 2017
I went to the Foundation at 220 Montgomery in November 2012 both Chuck and Amy were very helpful and kept straight faces and gave me numbers for Stanford's outpatient facility and got me through to Bo...b Saget who insisted I have Scleroderma in the first place. See More
Norma Worthy
· February 18, 2016
I lost my mom Delois Marva (Graham) Isaac to Scleroderma in Aug., of 2003. That was a devastating blow. My world was rocked to it's core..... My beautiful mom was only 64 years old at the time she ...transitioned..... The reason I had a time accepting the loss, is because she was very healthy. Mom walked a lot, she didn't drink nor smoke, she maintained her weight..... She looked lovely until the disease started to progress..... The time inbetween her being diagnosed, and expiring was around 2 1/2 years....... See More
Joanne Cooper
· March 18, 2016
My mum passed away a year ago, she had suffered a long time, but always managed to smile, we are in the UK and there was no support for her at all, and we met loads of doctors and other profession...als along the way, who didn't know about or understand the condition, thank you for spreading awareness and for the invaluable support I am sure you bring to many people ☺ See More
Bobby Smith
· July 27, 2015
Its a great thing to have sites like this. It provides great information about this disease. And it lets people know that they are not alone with this. I am in the process of trying to get a diagnosis... for myself. Blood work does not show I have schleroderma but many doctors think its what I have. They keep referencing systemic scleroderma. My esaphagus has been effected greatly and my hands and joints in my body. But the one thing that is throwing some doctors off is that I show no signs of the hardening of the skin. I have completely changed my diet and it helps a little with my digestive and esophageal problems. I have a question for anybody willing to answer, is it possible to have schleroderma without having the hardening of the skin? Thanks again for providing this site. Its a great source for people to have. See More
Dana King Baker
· October 10, 2014
I have just come across your page and the questions and answers have been encouraging and educational to actually listen to real people who understand this illness. I'm hopeful to have help in each st...ate of this curve in the road I'm in through this page. Thank you for all you do. See More
Doris Watson
· November 25, 2014
I hate even the name of it . I have watch my daughter fight this she has system scleroderma and she hurts so bad she has to work 5 days a week and she is going to until the very end. We all know we... or going to die but it hurts watching who you love go thru it. I pray each day for her and give .me streath . God is the answer keep your heart right with God. See More
Adrian Ventura
· September 21, 2017
This page has turned into left wing political trash. I will never donate again.
Carrie Walker
· November 22, 2014
In my years with fighting this relentless disease, I've faced many obstacles. Ones that are so great, they seem far more than I can bare. So few people have scleroderma that often one may feel alone. ...The scleroderma foundation not only educates but gives u a glimpse n others lives that are affected by this illness. This gives me more hope and understanding with a since of community as with the other estimated 299,000 I stand united with. Plz spread awareness and hope for others. .. See More
Lenneice B Lanier
· June 11, 2014
I thank GOD for the information I receive from your website. As a patient of 10 years, I try to learn as much as I can to help me cope with all the systems I experience on a daily basis and any brea...k-through information that would things a little easier to deal with scleroderma. See More
Dora Saavedra
· April 29, 2017
I have scleroderma is been very hard for me don't know how to deal with it
Dawn Clark
· May 22, 2014
I have had this disease along with several others that kinda ride on the scleroderma coattail... As my Dr. Would explain.
Horrible...I can't even believe this???? Within 2 years, I have lost my thumb.....due to digital ulcers that got gangrene in it. More fingers have infection, excruciating pain. My hands won't hardly bend and my wrist are so tight that there are like bands around my wrists...that too is painful. Joints....muscles.....esophageal issues, kidney issues, pulmonary, and circulatory.... I just keep getting worse. See More
Posts

Grassroots Advocacy Webinar
"Using Your Voice to Meet with an Elected Official"
February 26, 2 p.m. ET

What does a scleroderma advocate do during Capitol Hill Day? Join our webinar on February 26 at 2 p.m. Eastern time to find out! Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with sc...leroderma, a patient who uses a medical device and an advocate who works in a chapter. Excellent opportunity to see what the day is all about.

Join Feb. 26 Webinar; Dial 302-202-5900;
Enter Conference ID 710-462-255
http://www.scleroderma.org/site/PageServer…

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Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with scleroderma, a patient who uses a medical device and a....
scleroderma.org
Posts

2018 Capitol Hill Day - April 16-18
CALLING ALL ADVOCATES!

The Capitol Hill Day 2018 application is now available. Included in the application form is a request for scholarship assistance. An application is required whether you’re applying for a scholarship or not. We need advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia.

...

Deadline to apply (scholarship and non-scholarship) is Wednesday, February 28, 2018.

http://www.scleroderma.org/site/PageServer…

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2018 Capitol Hill Day Application Click the link to the left. Download the file. Save to your computer, and then complete the application using the fillable fields. Save the completed document.
scleroderma.org

What would you like to talk about today? Join the Scleroderma Foundations’ “Inspire” support group and discussion community.
https://www.inspire.com/groups/scleroderma-foundation/

A support community connecting scleroderma patients and caregivers. Get advice and information about new diagnoses, treatments, and more.
inspire.com

Research Participation Opportunity
Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.
For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.

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Did you receive your eLetter today? Sign up online to receive our weekly email with important and helpful info about scleroderma research, treatments, and activities.

http://www.scleroderma.org/site/PageServer…

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BRAVOS Study
Diffuse cutaneous systemic sclerosis (dcSSc) is an autoimmune disease also known as progressive scleroderma. The BRAVOS clinical trial is currently enrolling scleroderma patients to determine the safety and tolerability of brentuximab vedotin, a drug that is FDA-approved for the treatment of Hodgkin’s and other lymphomas.

The BRAVOS study is being conducted at research centers across the United States. You may be eligible to participate in the BRAVOS study if you...:
• Are 18 to 70 years old
• Have been diagnosed with dcSSc
• Have had dcSSc for 5 or fewer years
• Are on ongoing immunosuppressive therapy with one of the following: methotrexate, mycophenolate mofetil or azathioprine
Learn more about the BRAVOS study on clinicaltrials.gov (NCT03222492) or the study website, www.bravos-study.org.

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Join us at 11 a.m. Eastern!

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Boehringer Ingelheim was live.

🎥 Live from Bordeaux, France. Join us for a Facebook Live event featuring three incredible individuals living with scleroderma.

JOIN us TODAY, Feb. 16 at 11 a.m. Eastern, for a special "FACEBOOK LIVE" event from the 5th Systemic Sclerosis World Congress. Robert Riggs, CEO of the Scleroderma Foundation, will facilitate an awareness discussion with an international panel of individuals living with scleroderma from Europe and the United States.

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Join us at 11 a.m. Eastern today!

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Boehringer Ingelheim

One-hour countdown: Please join us and the Scleroderma Foundation and Fesca - Federation of European Scleroderma Associations for a Facebook Live event from th...e 5th Systemic Sclerosis World Congress featuring three incredible people living with the disease. Please take the opportunity to ask questions about scleroderma and stay tuned to find out the answers!

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We will share this Facebook Live event on this page.

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Boehringer Ingelheim

Mark your calendars and join us, @SclerodermaUS and @fesca.scleroderma on February 16th for a #FacebookLive event from the Systemic Sclerosis World Congress... in Bordeaux, France.

Have a question? Comment below or tweet to us @BoheringerUS, and we’ll do our best to answer it during the event.

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CATALYST Trial
If you have #scleroderma and #PAH (pulmonary arterial hypertension), please visit www.CATALYSTtrial.com to learn more about a research study evaluating a once daily oral drug.

Join us tomorrow, February 16 at 11 a.m. Eastern, for a "Facebook Live" event from the 5th Systemic Sclerosis World Congress

Each person living with #scleroderma has a special story. On February 16 at 11 a.m. Eastern time, the Scleroderma Foundation's Facebook page will share a special "Facebook Live" broadcast from the 5th Systemic Sclerosis World Congress. Robert Riggs, CEO of the Scleroderma Foundation, will facilitate an awareness discussion with an international panel of individuals living with scleroderma from Europe and the United States.

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Take one step closer to a cure for #scleroderma! Join us at a #SteppingOut to #CureScleroderma walk or run near you. Gather your family, friends, and coworkers to form a team. Create a fundraising page on the Stepping Out website and use the online tools to request donations and manage your team.

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The scholarship application for the Scleroderma Foundation's 2018 National Patient Education Conference is available for download. The application deadline is March 21. Scholarships are available for adult's with #scleroderma, children with scleroderma, and parent caregivers of minor children with scleroderma. Priority is given to applicants attending for the first time.
www.scleroderma.org/scholarship

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