In 2008 I was diagnosed with Systemic Mastocytosis and MDS. Mastocytosis is a rare immunological disease, affecting the production and function of white blood cells. Mastocytosis can also be accompanied by a neoplasm, which in my case was Myelodysplastic syndrome (MDS).
I was fortunate to have a Bone Marrow Transplant (BMT) in 2009. Many transplant patients experience some kind of rejection from the donor organ called GRAFT vs HOST DISEASE (GVHD). There are 2 types of GVHD. Acute ( aGVHD)and chronic (cGVHD). Days after my transplant, I experienced aGVHD which required intensive pharmaceutical intervention. Once the aGVHD resolved, I will discharged. only to be readmitted with cGVHD 3 months later. I spent 6 months at the Seattle Cancer Care Center before I was able to be sent home.
Updates (1)
September 7, 2019
I was fortunate to have a lifesaving Bone Marrow Transplant (BMT) 10 years ago. Unfortunately , this lifesaving procedure has a major side effect called GRAFT VS HOST DISEASE (GVHD). Many transplant patients experience some kind of rejection from the donor organ, but it usually resolves with immunosuppressant therapy. Other patients of organ transplants have a much longer lasting form of GVHD called Chronic GVHD (cGVHD). I am living with the day to day challenges of cGVHD. I am under the care of Dr. Schriber who manages my post transplant care. Dr. Epstein at the Dry Eye Institute monitors my chronic dry eyes. The BMT has left me with severely dry eyes due to lack of tear production. cGVHD has caused the destruction of the glands that lubricate the eye. The cost of the specialized lenses that bathe my eyes in liquid are exuberant along with the routine eye exams. I also require over the counter product to care for these lenses. When I am not wearing lenses, I require frequent use of lubricating eye drops.
My joints, muscles and skin integrity have also been affected by the cGVHD. I have tried many therapies, such as deep muscle massage, physical therapy and the Graston technique to reverse the tightening of my skin, muscles and joints.The most severely affected areas are my ankles, lower legs, knees, wrists, forearms, elbows and shoulders.This in turn affects my balance profoundly.
I am also taking immunosuppressant therapy which has it’s own set of side effects. My hope is to be able to eliminate the need for pharmaceutical therapies, but at this time, the absence of these drugs would severely affect what progress I have made in combating this disease.
I would like to thank you for taking the time to read my story. If you would like to donate to my campaign, your generosity would be greatly appreciated.
