"I look forward to many more years and to support research to aid SDS patients in the fight against leukemia and Myelodysplastic Syndrome." concludes Cresta. Read her and her family's story, here.
This is the Story of me: Cresta Morris. I have Shwachman Diamond Syndrome (SDS).
I was born and raised in Bend, Oregon. My parents, Ken & Celeste Harmon, had two other children with SDS: Mical (deceased in 1976) & and another girl (born in 1980). My parents were said to have been missing the same gene which would cause SDS in all three of their children. My sister Mical was 13 months when she died; it was revealed by an autopsy that she had died of Shwachman Diamond Syndrome. My Mom was 6 months pregnant with me when Mical died.
Three months after I was born my parents were told that I had SDS as well. At 11 months old, my parents tracked down Dr. Harry Shwachman himself and we flew to Boston to see him at Boston Children’s Hospital.
This in itself was a remarkable event. The whole community came together to make the trip possible for my family.
By that time, I had started exhibiting the same symptoms that my sister had before she died. My parents wanted to get answers – they wanted to know that I would be able to live. Dr. Shwachman put me on Cotazym (“Enzymes”) for food absorption/digestion for my pancreatic exocrine insufficiency (PEI). Dr. Shwachman told my parents the most important thing was for me to avoid contracting measles, mumps, pneumonia, or other serious illnesses and that if I made it to my 3rd birthday, the real big problems were over.
Dr. Shwachman told my parents the most important thing was for me to avoid contracting measles, mumps, pneumonia, or other serious illnesses and that if I made it to my 3rd birthday, the real big problems were over.
I just turned 46. My parents and I are so blessed to have each day. I made it past 3 years old and beyond. I am married and have 2 healthy girls. I work as an admin assistant at our local community college. I still have some health issues, but overall live a happy and full life.
I am of short stature: 5’1.5” (whereas my dad is 6’1” and mom is 5’8”); I take pancreatic enzymes (Creon) to aid in the digestion/absorption; I am on a dairy free diet, as dairy is hard for me to digest and entails profuse gas and stomach problems; I have neutropenia & low white blood cell counts; my bone marrow is being monitored closely; I have weak bones and issues with the bones in my knees and shoulder, plus recurring arthritis & cartilage issues.
In 2017, I was diagnosed with a squamous cell carcinoma on my tonsils which was treated successfully. That is how I found a doctor in Seattle, WA who specializes in SDS. Her name is Dr. Sioban Keel, a hematologist at Seattle Cancer Care Alliance. I go to Seattle once a year to see her for my annual bone marrow biopsy and to donate samples for SDS Research.
I look forward to many more years and to support research to aid SDS patients in the fight against leukemia and Myelodysplastic Syndrome.
Sincerely,
Cresta Morris