|Dr Susan Nyanzi, USA|
It took them a while to determine what I had and after the diagnosis, I was only given months to live.
There are limited medications for the GI. Over the years, I’ve gone through all them, but found that lifestyle changes helped a great deal better than meds and they don’t have side effects.
That’s why I put on the Patient to Patient Experience Symposium.
Lab results alone are not enough for a diagnosis.
Since its your body don’t settle on what one provider says. Always go to a second, third opinion and choose hospitals with Scleroderma centers.
You can live life fully with it, just have to deal with issues as soon as they come up, have a support system around you, (it may be only be Scleroderma sisters and that’s better than nothing), get rid of the negative people because that just adds stress to the body.
To read Dr Susan's article 'Is a balanced healthy diet enough to manage chronic conditions', Click here
Huge Thanks go to Dr Susan for sharing her scleroderma experience, as well as, huge thanks for all that she does for the global scleroderma community.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice