Growing Lungs in a Dish...

 

Growing Lungs: Scientists Are Using Stem Cells to Try and Grow Human Lungs in a Dish

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New Show Idea!

We need a version of the show Undercover Boss but where an insurance company CEO visits active disability policy holders who are about to be denied continued benefits.

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TED: Timothy Ihrig: What we can do to die well

The healthcare industry in America is so focused on pathology, surgery and pharmacology — on what doctors "do" to patients — that it often overlooks the values of the human beings it's supposed to care for. Palliative care physician Timothy Ihrig explains the benefits of a different approach, one that fosters a patient's overall quality of life and navigates serious illness from diagnosis to death with dignity and compassion.

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Orphan Drug Designation Granted to Nintedanib for Treatment of Systemic Sclerosis, including Associated Interstitial Lung Disease

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Global Scleroderma Initiative

Hello All!

Some of you are aware that I have been talking about starting a global Scleroderma organization focused on patients, providing information to patients about treatment options and research from around the world! This is a global disease and we need a global solution. Communication is the key to success. Communication globally between patients, communication globally between patients and doctors, communication globally between doctors and other doctors and communication globally between researchers and all of the above. I want this organization to be a central source for global resources and information on Scleroderma.

If you are interested in volunteering, please let me know at sclerodermaonline@gmail.com and how you think you would best be able to contribute.  I would like at least one volunteer from as many different countries as possible. As I am only fluent in English, with some abilities in Spanish and German, I would need you to speak enough English to be able to communicate with me. As we grow, information will be made available in as many languages as possible and perhaps I'll improve on the languages I know and learn a few new ones along the way. :-)

Also, here are some names for the organization that I and some of you have already come up with and that are not currently in use to the best of my knowledge. Please vote or comment on them or make more name suggestions:
Global Scleroderma Community
United Scleroderma International
International Scleroderma Initiative
International Scleroderma League
Global Scleroderma Outreach
International Scleroderma Coalition
International Scleroderma Alliance
International Scleroderma Association
International Scleroderma Society
International Scleroderma Guild

So, spread the word. Share a link to this website with ALL your friends, family, coworkers, etc. from around the world! http://www.sclerodermainfo.com 

Check us out on:
Facebook: http://fb.me/SclerdermaInfo
Twitter: @SclerodermaO or click here: https://twitter.com/sclerodermao

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The Mighty - Dealing with Chronic Illness Together

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Understanding Scleroderma’s ‘Social Network’ May Lead to New Treatments

Michael Whitfield, PhD of Dartmouth’s Geisel School of Medicine

We found that a common link exists between the fibrosis in different organs affected in scleroderma, specifically skin, lungs, GI tract, and peripheral blood cells. That common link is a certain type of cell of the innate immune system that we think is driving the disease. The innate immune system consists of the immediate responses that the body has to an injury or infection.

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Risk of Pulmonary Embolism and Deep Venous Thrombosis in Systemic Sclerosis

I wish this study had come out before my Southeast Asia trip as I am recovering from 4 pulmonary emboli which probably started as a deep vein thrombosis after my flight to SE Asia.

"Risk of Pulmonary Embolism and Deep Venous Thrombosis in Systemic Sclerosis"

Link to News Story: http://sclerodermanews.com/2016/02/04/systemic-sclerosis-patients-threefold-risk-venous-thromboembolism/

Link to actual scientific paper: http://onlinelibrary.wiley.com/doi/10.1002/acr.22673/abstract

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4th Systemic Sclerosis (Scleroderma) World Congress

 4th Systemic Sclerosis World Congress, February 18-20, 2016

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Study shows path to 'dial down' autoimmunity without compromising immune response...

A new study led by scientists at The Scripps Research Institute (TSRI) shows how dangerous autoimmune responses, seen in diseases such as lupus and multiple sclerosis, might be "dialed down" without compromising the immune system's ability to fight viruses and bacteria.

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