The story of Simona White
Hello I am a 51 year old woman,my name is Simona I was born with Von Wiiedbrands Disease and Quebec Platelet Syndrome and Luddles Disease.
My mother passed at a early age from the same disorder, we inherited the disorder from her father who had a great grandmother who was German and her mother who was 100% French Creole.
I might add that I am African American with these inherited Diseases,I was diagnosed at a early age I was diagnosed at Mayos Clinic and National Institutes of Health.
It has been a journey but I believe God gave me these disorders not to punish me but to be a blessing and testimony to others.It is hard having a rare disorder,doctors are not familiar and you can not get the proper care when you are seen in the emergency room,the doctors are not educated on the disorder and they are rude at times or don’t know where to begin with treatment.
To all who have rare disorders we are beautiful and strong we endure a lot but we can still thank God for allowing us to see another day..
We are warriors and we will continue to fight for ourselves and others who are
being treated for a rare illness,and I know there will someday be a Cure,
Thank you for reading part of my story it has been nobody but God who has kept me and blessed me to be a warrior,and I know I am not the only one so all warriors stand up and let the world know we are rare precious gems.
Love Simona