Help us find a cure for Myelofibrosis
Published 12:00 am Friday, June 12, 2009
Good morning Natchez and all our Miss-Lou neighbors. My name is Carol King and I have a very rare bone marrow disease called Myelofibrosis. Myleofibrosis is a disease that affects only one out of 1,000 individuals.
Myelofibrosis affects the bone marrow, replacing the majority of the bone marrow with scar tissue thereby diminishing one’s ability to produce enough red blood cells to maintain a normal life. Therefore, the individual develops anemia, and in most cases, frequent blood transfusions are required to sustain life. There is no medication for Myelofibrosis. However, since the JAK-2 gene was discovered in 2005 by a British scientist research has begun to develop a medication to manage the disease.
In the meantime, the only cure is a bone marrow transplant. I’ve been searching for a bone marrow donor since diagnosis. During this process, I have learned how difficult finding a donor can be. The donor pool for black people is very small. In fact, only 15 percent of blacks who need a bone marrow transplant find a match within the first six months of their search (the match rate for whites is approximately 45 percent — still, a dismal statistic). Before I was diagnosed and in need of a donor it never occurred to me to become a bone marrow donor.
Since I learned of my need for a donor I am now aware of the thousands of black people looking for a donor. If the pool were larger it would diminish dramatically the lengthy, and too often futile searches — especially, for minorities.
Let me demonstrate to you how important it is for more people to register in the national marrow database.
The Bone Marrow Donor Program is a world wide donor bank. To date, my bone marrow has been matched against 12 million donors, and so far no matches. One of the main reasons my physician has not been able to find a match for me is a lack of black donors. Still, I encourage all people to get swabbed and register into the database given that matching across races can occur, and we can increase the matching success rate for all Americans.
Now is a good time to think seriously about registering. It’s so easy, simple and may be life saving. I’m not asking people to register into the database solely because I have found myself in need of a transplant; but, because there are thousands of other people out there just like me that need you to do so.
Criteria for registering into the database include being between the ages of 18 and 60 years, and to be in good health. I will suggest to anyone who is living with anemia, as I did all of my life, and who is experiencing fatigue, having to take iron pills or iron injections, or who may be eating blood building foods and who still is anemic that maybe it’s time to have a bone marrow biopsy.
Consult your physician for an opinion. The minor discomfort that you will experience could be beneficial to you in the long-run.
On June 13, the National Bone Marrow Program and the National Blood Bank Program will be in the Natchez Mall to hold registration and donation drives respectively. If anyone is seriously thinking of registering or becoming a blood donor please come by and see us between the hours of 10 a.m. and 5 p.m. The service is open to the public and is free of charge to everyone.
Additionally, I would love to hear from you if you or a loved one is diagnosed with Myelofibrosis. If so, please e-mail me at carolsking@hotmail.com.
Carol King is a Natchez native.