Hi, name is Adrienne and I am writing this on behalf of my sister Roshlind.
My 16 year old sister, Roshlind Mance was diagnosed with 2 rare diseases this summer – Aplastic Anemia which is a rare blood disease and Paroxysmal Nocturnal Hemoglobinuria (PNH), which is a rare disease of the bone marrow.
Aplastic anemia happens when your bone marrow fails to produce enough blood cells and your own immune system attacks and kills your bone marrow stem cells which are required for blood cell production. When they are killed, your blood count falls, often to very low levels, which in return causes fatigue and tiredness, bleeding and bruising and increases the risk for infections.
PNH causes red blood cells to break down sooner than they should and this early destruction can lead to symptoms and complications that range from minimal to severe which can include leukemia, thrombosis and strokes. PNH is so rare that it only affects 1 person per million of the population.
Since being discharged from the hospital, Rosh still goes to the hospital twice a week to receive platelet and blood transfusions to keep her blood level as close to normal as possible. She will also need 2 separate treatments for each disease. Unfortunately, her treatment for PNH was declined funding from the government of Alberta due to the high cost of $500,000 a year. (This high cost and lack of coverage from the government is because PNH is so rare and not many people require it.)
Roshlind’s only chance at returning to a normal life and curing both diseases is to undergo a stem cell transplant. Siblings are a best potential match for a transplant at a 20% chance, and parents at 5%. We recently found out that my parents nor my middle sister and I were not a match for her.
Unfortunately there are very few Asians who know about stem cell transplants and even fewer that are registered to be a donor. Roshlind is of Filipino descent, and her only chance of finding a match from a donor is within the Asian population. Only 1% of the One Match Stem & Marrow network is made up of Filipino descent. This makes it very difficult to find a match for Roshlind and others like her. We have launched a campaign to raise awareness for the lack of Asians and ethnic minorities within the system. We are hoping that our campaign will widen the stem cell pool to help not only my sister, but other Asians waiting for a transplant or who may need one in the future.
Our family is hosting 2 donor drives in Canada to help maximize the chances in finding my sister a match. Please visit the links below for more information.
www.match4roshlind.com for more information on our campaign.
Our Facebook event is at https://www.facebook.com/Match4Roshlind
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