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ASTRID WANTS TO LIVE AND SEE HER SONS GROW UP – URGENT SEARCH FOR STEM CELL DONORS
Preparations for donor registration event are in full swing
Astrid suffers from blood cancer. A stem cell transplant is her only chance of survival. Anyone who is healthy and between 18-50 years old, can help by registering as a potential stem cell donor on Saturday, 4th of May, in Enugu and Abuja, and on 11th of May in Lagos, with the Bone Marrow Registry Nigeria (BMRN). Registration only takes only a few minutes, does not hurt and involves no costs for anyone who signs up.
At the end of September 2018, Astrid went to the doctor for a sore throat. The doctor prescribed rest and medication but over the weekend her condition worsened. “I had a fever, felt weak and my gums were badly inflamed,” said Astrid. She had her blood tested. The results were a complete shock: she was diagnosed with blood cancer. Astrid immediately started chemotherapy. In order to have hope of life, the mother of two sons, urgently needs a matching stem cell donor.
However, the search for her genetic twin is very difficult. The chances of finding this match is 1:100 000 and the best chance of a match is within your same ethnic background. There is only a 25% chance that a sibling will be a match. The remaining 75% chance depends on an unrelated matching donor being found.
“Mixed origin patients around the world are at a disadvantage due to the underrepresentation in the global donor pool, we need to change this“ said Astrid. Astrid is of Nigerian-German descent.
Together with BMRN, Astrid’s family and friends are
organizing donor drive registration events in Nigeria. Increasing the number of
donors from Nigeria is crucial to significantly improving the situation of
Nigerian blood cancer patients and patients like Astrid, who are of mixed
origin. Astrid appeals to the population: “more people of mixed origin
need to be motivated to register as donors as blood cancer can effect anyone.
Because of my genetic makeup, my chance of finding a matching donor makes it even
more difficult. The thought that I might not be able to see my sons grow up is
unbearable for me.”
The life-threatening illness is not the first stroke of fate the family has had to cope with. Her husband Florian was paralyzed in a traffic accident in 2014. Astrid’s friends describe her as an incredibly positive and strong woman. She urgently needs the support of the entire population to register as potential stem cell donors for her and others living with blood cancers.
A blood stem cell transplant as it is more commonly known today, is essentially a procedure where a person’s defective cells in their bone marrow is replaced by healthy ones from their donor. For the donor, it involves a fairly painless procedure that can take up to 6 hours, which is very similar to donating platelets and with no major side effects.
The BMRN is calling on individuals between the ages of 18-45 years, in general good health with a weight of more than 50kgs and a BMI of less than 40 to register as donors. Registration is quick and easy: after filling out a consent form, a cheek swab is taken from the donor using cotton swabs so that the tissue characteristics can be determined in the laboratory.
Donors who have already registered in the past do not have to register again. Once registered, their data will be available to patients worldwide until they turn 61 years.
Since the date for the registration event has been set, Astrid’s family and friends have been working round the clock to make this drive successful.
If you are willing to consider helping anyone in need of a transplant for whom you might be a match, come and register in person at our drive. The process will take less than 10 minutes of your time.
If you’re interested to register, please refrain from consuming any food, chewing gum and beverages for an hour before coming through to register.
Everyone involved agrees on one thing: “What are ten minutes of your time for a cheek swab if you can give hope of life to someone!”
Help Ayden find a donor to save his life!
My name is Astrid (Ada). I was diagnosed with a particularly severe form of blood cancer – Acute Myeloid Leukemia (AML).
I am Nigerian-German and urgently need a European-African stem cell donor who can help me to continue being there for my children, my husband and my friends.
Given the advanced nature of the disease, every day, every hour, every minute counts!
If one parent of yours comes from West Africa, ideally Nigeria from the ethnic group of Ibo / Igbo and the other from Europe, you can help save my life with a stem cell donation.
Do these criteria apply to you? Then please register to have your blood tested here!
A blood test is the fastest way to find my match. Please join the registry today.
I very much hope for your help! Your Astrid (Ada)
Launched in October 2017, Stem Cell Registry Alliance is a collaborative effort among stem cell registries in the Caribbean, United Kingdom, and Africa to recruit 100,000 new donors by 2030 (dubbed the “100K Africa Challenge”).
Millions of individuals worldwide live with blood cancers – like leukemia, myeloma, Hodgkin lymphoma, and non-Hodgkin lymphoma – and sickle-cell anemia. In the United States, one person is diagnosed with a blood cancer every three minutes, and every nine minutes, a blood cancer patient dies. Many of these life-threatenting illnesses could be cured with a stem cell transplant.
However, for thousands of patients of African descent suffering with these diseases in the United States, the likelihood of finding a suitable donor match is less than 17%, whereas the rate soars to nearly 70% for Caucasian patients. In the UK, 80% of African/Caribbean individuals battling leukemia will not find a matched donor to save their life. In contrast, a Caucasian has a up 90% chance of survival.
Why such a large disparity?
One of the major impediments to matching patients of African ancestry with compatible donors is the scarcity of black donors who are registered with stem cell donor registries around the world. This gap, in turn, is driven by the steep logistical and financial hurdles involved in creating a registry, which are often enough to prevent resource-constrained countries in Africa and the Caribbean from launching their own registries.
“Nigeria is home to one-quarter of Africa’s population, with almost 400 distinct ethnic groups,” said Professor Ifeoma Okoye and Dr. Sunday Ocheni, co-directors of the Nigerian registry. “The sheer size and diversity of Nigeria’s population make it an ideal location to recruit donors, but we are constantly battling a lack of funds.”
The Stem Cell Registry Alliance (SCRA) was created to reduce the start-up and operational costs for registries in developing countries. Starting in 2018, members of the SCRA will recruit donors across Africa and store the HLA data in The Sunflower Registry – the first ever pan-African donor registry – which has just been recognized as a professional member of the World Marrow Donor Association.
By pooling their resources, SCRA member registries seek to create economies of scale, reduce barriers for new African registries, and enable research into HLA phenotype distributions across Africa, which in turn will improve search algorithms for patients of African descent and improve their odds of finding a matching donor.
Orin Lewis, CEO and co-founder of ACLT said:
“As one of the leading leukaemia charities in the UK, ACLT are excited to be a founding member of the Stem Cell Registry Alliance. By working in this collaborative way, SCRA will raise awareness to drive change regarding stem cell donation within African/Caribbean communities worldwide. It will allow ACLT to share our expertise gained over the last 21 years alongside SCRA members and feed into our belief that no patient should die, due to a matched donor not being available to them.”
BMRN’s Professor Okoye has just been named to the UICC’s (Union for International Cancer Control) Advisory Board as the “African Observer”, allowing her to expand global advocacy for patients of African descent.
“This is a title I have yet to earn,” said Mr. Adebiyi at the New York Stem Cell Foundation‘s annual gala.
BBC’s Focus on Africa article features two personal stories behind the launch of Nigeria’s first bone marrow registry: stem cell donor Bisi Bokinni and stem cell recipient (and BMRN founder) Seun Adebiyi
Bone marrow transplants, or hematopoietic stem cell transplantations (HSCT), treat more than 70 different diseases, including some types of leukemia, lymphoma, and sickle cell anaemia.
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