"With an orphan disease, the support can be hard to find. I found that support at the MPN research foundation." - Juan Alderete, PV '06. On Hydroxurea/baby-aspirin and living a quality life! Photo credit: Marianne Williams

Vivienne

My name is Vivienne and I have PV. I was diagnosed in April 2001 and set out to find out all I could about this rare illness that I had never heard of! I was referred to a local Hematologist and have been very satisfied with the care and advise that I have received from him. I have also visited Dr. Spivak at Johns Hopkins and volunteered for a Clinical Trial at NIH in Bethesda Maryland.

Throughout the ten years that I have had PV I have been very fortunate to see great strides in our knowledge about MPNs. During this time I gave blood for the study that found the genetic mutation which is carried by almost all PV patients (97%). I am JAK2 positive and heterozygous. Working closely with my doctors, and reading numerous articles I decided that I would do “as little as possible for as long as possible”. I took aspirin and did phlebotomies until last year when I had two serious bleeding episodes and it was obvious that I could not continue without taking some medication to control my counts.

I am taking Hydroxeria a medication that has a track record and has worked well for me. I have found with PV that each person responds to the illness in different ways. I know that Hydroxeria is viewed by some as a medication that can over time lead to Leukemia –however I take the view that the illness itself might be the culprit not just the medication. I had serious auto accident when I was 22 and every day is a blessing (and now I am 66) so I am not afraid of death. I believe that it is all about the quality of life.

I work full time and have a wonderful life. I do not let PV pull me down. I eat properly, exercise and have a wonderful family. My advice to anyone who might read this –do not become obsessed by these illnesses –go to a University Level Hematologist and take their advice. If you can go to a MPN specialist do it –and work with your local doctor to implement their suggestions. Read all you can and be your own advocate. Most of all join a support group!!

Love your family and friends and love yourself-you have many years ahead of you. This is a chronic illness not a death sentence. Do not believe those who give you a time frame. None of us knows when we will pass from this world. Just enjoy the day and do not let PV or any of the MPNs spoil your day.

 

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