|Patti Pascucci, USA|
During the time, I researched the disease back in my Clinical Immunology class.
I wanted to know more because my maternal grandmother had died from of it, age 46 - a year before I was born.
Then he told my husband and I to go home, and live my life as best as I could. No treatments, no cure... he read off a long list of what to expect along with early death... and said goodbye.
I had experienced worsening symptoms just a few months earlier with my skin swelling so tight and my elbows breaking open to the bones.
My arms were experiencing awful contractures so mobility became hard.
I had no one to talk to about it all and my family lived 75 miles away.
My husband was actually looking for me to die... or getting so bad he could divorce me and take the kids... and he worked it so that he made my life even more miserable with his cheating.
He was a very controlling and manipulative man who worked out a plan to get out of the marriage but make me so miserable that I would file for divorce.
And then I lost my job as my fingers could no longer perform the laboratory tests. I then found a part time job in advertising sales where I could make my own hours and work from home if needed.
And, I have met several people here with Scleroderma... in Hollis and Nashua... that's within a 7 mile radius! Unbelievable considering the rarity.
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