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Anouar Naitelhaj-Ali

Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria

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Ethnicity Why does it matter ? ?
ARAB, OTHER
Country
United States
Status
Looking
Diagnosis date
Jul 6, 2018
Illness
Aplastic Anemia and Paroxysmal Noctural Hemaglobinuria
Their Story

Anouar's story

Anouar grew up as an only child raised by his mom in the city of Ait Melloul in the south of Morocco. In 2018, after months of dropping levels of all types of blood cells, he was diagnosed with severe aplastic anemia, an immune-mediated bone marrow failure disorder of unknown cause. He immediately started immunosuppressive treatment with blood transfusions until his blood levels began to stabilize.

More than one year of treatment saved his life and resulted in a temporary, partial remission in 2020, but not without consequences. The drug he was prescribed, cyclosporine, had severe effects on his body and on his psychological state, and in Morocco the availability of this drug is limited, leading to an immense amount of stress and economic hardship. Moreover, he later discovered that it is insufficient on its own as treatment for aplastic anemia, but the other drug he needed to take was not available. As a result, his bone marrow has since been in a fragile state with continuous fluctuations. At the end of September 2022, after months of steadily dropping blood cell levels, a PNH clone was found, and his lab results started showing signs of direct destruction of his red blood cells, a major feature of this disease. His hematologist suggests that if his blood cell levels continue to drop, he should try to find cyclosporine again and begin taking it as a salvage therapy.

Anouar continues to struggle to manage his condition in an environment where the health system is overstretched due to immense burden of illness in the society. After years of struggling to get his life back, he began looking into the possibility of a bone marrow transplant, the only known cure for his illness and those of so many others who struggle daily with blood disorders and cancers. Unfortunately, he has no siblings and there are no bone marrow registries in any North African country.

He hopes that if North Africans residing in Europe, Canada, the US, and any other part of the world with a bone marrow registry learn about cases like his, they'll choose to get swabbed and join a registry. A simple, painless act that takes five minutes can offer a truly second chance at life for Anouar and others like him. Please take a moment and get swabbed for all those who are waiting for a match, and share stories like Anouar's and others you read on here with anyone you know who may do the same!

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