MDS Cancer and Ocular Graft Verse Host Disease

I was diagnosed with myelodysplastic syndrome last year which is a form of blood cancer, and I had to undergo a stem cell transplant, I suffered from Graft Versus Host Disease as a result of the transplant. This disease occurs when the donor’s cells start to attack different parts of your body and is more common when you obtain cells from an unrelated donor. The donor was unrelated so I suffered Graft Versus Host Disease of the skin and Ocular Graft Versus Host disease of the eyes as a result of the rejection. I also experienced other ailments such as dry mouth and dry throat which caused tooth decay and required me to repair two teeth and obtain one crown. I have also seen an array of doctors for painful rectal fissures and I am taking pain killers to deal with the chronic pain. My doctor would not let me see any doctors for treatment for seven months because I was neutropenic and suffered from a risk of infection. This only caused certain ailments to become worse. I also have inflammation and painful swelling in my body. All of these ailments have caused me to seek treatment from an array of doctors besides that of my present oncology treatment at the cancer center. My doctor just informed me that he was working on the approval of a drug called Ibrutinib (Imbruvica). I was informed by my insurance company that the drug was insured but costs $794.00 for the lowest dose. I still do not know what the monthly cost will be until it is approved and the dosages are submitted to the company by my doctor. I also need autogolous drops which cost $300.00 and they are not covered. I will also need scleral lenses and they will not be covered by my insurance because I already saw an opthamologist for glasses. The scleral lenses will cost $4000.00  per eye or more. My major concern is preserving my vision right now. These drugs and drops will all be administered to help cure the Ocular GVHD in my eyes that has limited my ability to complete daily tasks and to achieve my dream goals. 

I believe that the worst ailment that I am currently suffering from now besides undergoing treatment for cancer is Ocular Graft Host Disease which has caused extreme dry eyes. I feel like rocks and sandpaper are grating through my eyes. I have extreme sensitivity to the sun and light. I often wear glasses and hats when I am outdoors and indoors. I have tried a series of treatments and have seen an array of doctors. These treatments included steroids, eye lid scrapings, eye drops, special glasses and Restasis. The eye doctors put upper and lower punctal plugs in my eyes and they fell out three times. They needed to be replaced. I decided to order autologous drops since nothing has worked. These drops are not in network. I plan on getting scleral lenses if the plugs do not work. I need to replace my upper punctal plugs. I am still suffering from ailments, but my eyes have caused the worst pain I have ever experienced since they interfere with my daily tasks.

I also survived severe aplastic anemia prior to cancer twice, which is a life-threatening disease that causes a deficiency of platelets, hemoglobin and neutrophils in your body. This is not the first time I have battled a life-threatening illness. I consider myself a fighter and I refuse to give up since I am now battling MDS.

The funds will help me because I am not just paying for the transplant and receiving treatments at NYU cancer center, but I am seeing an array of doctors and obtaining certain out of network treatments. 

My illness has interfered with my career and my dream goals. I was working as an art teacher but I had to leave becaue of my illness. I have a permanent state certification to teach English on the secondary level. I also have a Master of Arts degree. I play the piano, design clothing and create textual art. I wanted to use my creative and literary abilities to open a healing arts center, but I fell ill after working on my business plan.

My Ocular Graft Verse Host Disease has interfered with my life because I spend half my day in bed because the grating sandpaper feeling and pain makes me just want to keep my eyes shut. I can not look at the computer for extended periods of time or see clearly without a magnifier and glasses. I have greater things to accomplish in this life. I believe that if I just survive this graft versus host disease that I will be able to venture out into the world and pursue my dreams again.

I have composed a lot of music and written books to represent my survival from severe aplastic anemia and extreme emotional hardships in life. My dream is to inspire people one day with my creative and literary works.

I also used my creative abilities to teach healing arts at an assisted living home to people who suffered from mental illness and other hardships. This was a rewarding experience for me because I spent half my life in programs and therapy working on healing my spiritual body in order to heal my physical body. I fell ill so I had to take a leave from this job as well. Obtaining these funds will help me with the healing process and this in return, will help me achieve my dreams.