Hi Desiree,
You can find a short summary of the research here: http://www.niams.nih.gov/News_and_Events/Spotlight_on_Research/2012/endostatin_fibrosis.asp
I wrote this post when the study was first publicized in the summer of 2012. Research continues.

Barbara: See you do know things that alot of people don’t know, my daughter doesn’t take vitamins, what kind of vitamin shots are available. And I’m sure, you were there for Janice the last days, You were there for 18years!!! And Janice knows how much you loved her and knew you were with her to comfort and support and love her. Tell us all what you know, what helped her feel abit better, tell us anything you want. You and I and many others who are care/love supporters and those ill need to hear your journey through the painful 18 years.
Very sincere Lil

Thank you for allowing me to express on here… I dont want to be a downer, but I do think I know things that might help others. I.e. ask for vitamin shots, as Janice’s stomach became scarred and to help with malnutrition. I was with Janice the last days…

Barbara, of course it is your place. I don’t have it either, my oldest daughter 34 has it, but we all learn from each other and you telling people about staying close to you dear sister for 18 years, holds dear, to our hearts. I hope everyone has some one like you to love and care for them and stay right by her side. Thank you for printing out your story. and God Bless Your Dear Sister, and you Barbara, for all the love you shared together.

Thanks for sharing your brother’s story, Lubna. In addition to a cure, we need better physician education about scleroderma! So many of you have written about misdiagnoses leading to unnecessary suffering.

I lost my younger brother – he battled for 3 years and lost in 2009 due to complications of the lungs. He was mis-diagnosed for over a year or so and when the doctors finally agreed it was Sceloderma it was too late. as I read the research and university names I realize how help was so close – Walied (that’s my brothers name) did his MBA and previously started on PhD @ Penn State Univ – my other brother lives in Boston – when he got to Boston but when He got there, it was too late for him to take part in any research!

He was full of life and hope – just moved to homeland Sudan to set up a business – as he was suffering from what he thought at that time was diabetes – developed during his MBA years- unfortunately the Sceloderma – was never detected.

All the doctors worldwide Sudan, london Dublin Saudi misdiagnosed him! even when a doctor in Saudi guessed it was Sceloderma a leading UK rheumatologist laughed it off (really) saying there was a zero possibility . It was had we listen to him maybe Walied would have had a chance.

I hope the miracle is found TODAY!

There is too little research on this disease. I am praying for everybody – I hope a cure will be discovered Evelyen and thanks for sharing.

G’day to you, too, Liza! I’m glad my blog has given you some inspiration. And I do hope you get appropriate treatment. I think there is a great need for physician education about scleroderma, especially for doctors who are not practicing near major teaching hospitals, where much of the research is being done. Good luck with that, and I’m glad for you that you have kind neighbors who help you when your hands are too tired. I agree, we would all be ecstatic to live without this disease! In the meantime, we just have to do our best. Thanks for sharing.

Thanks, Barbara, for sharing. Maybe in our lifetimes, a cure will be found.