I Have Blood Cancer. But My African Heritage Means I Can’t Find a Stem Cell Donor.
When I got a sore throat in September 2018, cancer was the last thought that crossed my mind. Everything was business as usual. I had meetings, went grocery shopping, picked up my kids. When the pain got worse, I went to see a doctor. He prescribed me some pills.
But then I developed a fever and felt weaker. I went back to the doctor, who tested my blood. The call that changed my life came shortly afterwards.
One word. A word I would have never expected. Leukaemia. The test results were indicating that’s what was happening to me. I was asked to drive to the clinic for further tests.
I was sure there had to be mix-up. That the laboratory had accidentally swapped my blood sample. But after an hour in the clinic, the diagnosis was confirmed: Acute Myeloid Leukaemia, a particularly aggressive form of blood cancer.
The doctors urged me to immediately start chemotherapy.
I was sure: I will survive this
I thought about my sons. The thought of not being able to watch them grow up is unbearable for me. I thought of my husband. Fate had already dealt our family with another heavy blow five years ago. My husband was on his motorbike, when a car suddenly made a turn and hit him. He has since been paralyzed.
But he survived, with incredible courage and admirable strength and with his ability to accept help. He is a great role model for me. It was with such a fighting spirit that I began my chemotherapy. I was sure: I will survive this.
I lost my hair. A constant flow of morphine was the only way to deal with the heavy pain. But the chemo seemed to work, everything looked good at first. Unfortunately, the success did not last. It was in January that it became clear that my only chance to beat this cancer would be a stem cell donation.
There is not enough knowledge about stem cell donations
The following weeks developed into a crash course on stem cell donations. I soon realized how many misunderstandings prevail.
I first learned that donating stem cells today is very uncomplicated for the donor and requires no surgery. The procedure is quite similar to donating blood. Many people don’t know that.
The second learning was a shock: It is extremely difficult to find a suitable donor for me – because of my African and especially my mixed heritage. Among more than 30 million registered donors globally, not a single possible match has been found for me so far.
I am half-Nigerian, half-German. Before all this happened, I had no idea that a patient’s ethnic background plays any role for a stem cell donation. Far too few people know that.
A donation only has good chances of success when certain tissue characteristics of donor and patient are almost identical.
The probability of finding such a match is generally very low. But because so many people are already registered as potential stem cell donors globally, many patients also find a suitable donor.
Less than 3% of registered donors are multi-ethnic
Unfortunately, this is not true for all people.
A “genetic twin“ is usually found in a person who shares the same ethnic heritage. However, according to statistics from Canada, 70% of all registered donors are white.
The number of “non-white” donors massively lags behind, considering the fact that more than 90% of the global population are not white!
The problem increases when a patient has mixed genes, like me. Only less than 3% of registered donors are multi-ethnic, according to these numbers.
This is an unbelievable disparity. The chances for a white person to find a suitable donor are at least 80%. If you are black, your chances will only be slightly above 20%. And if you have a multi-ethnic background, they are close to zero.
More diversity in stem cell registries is urgently needed
My family and friends have been searching the world for my match for more than six months now.
But our goal is not only to hopefully find a stem cell donor for me. We also want to educate people.
Many more people of various ethnicities must register as potential stem cell donors, so that more patients get a chance to fight leukaemia and other blood diseases, like sickle cell anaemia. A person’s chances to survive must no longer depend on their ethnic heritage.
My clock is ticking. Currently, the cancer has been repressed to a level that allows me to also experience good moments.
But no one can tell when the cancer will suddenly start spreading again rapidly. The longer the search takes, the harder it gets for me to push negative thoughts aside. But despite everything, my courage and lust for life remain unbroken. I want to live.
Everyone could be a lifesaver
Searching for a donor and raising awareness requires extensive resources, and we do need help.
People who can help us spread our message globally – especially in countries where many black and multi-ethnic people live, like the UK, the US, South Africa, and many others.
People, who are willing to lend us some hours of their valuable time to support us, or even organize a donor registration event. And certainly, as many people as possible who can go and get registered.
Everyone could be a lifesaver – for me or another patient.
You can find more information about Astrid and how you can support her and other patients like her by going to help-astrid.com, or supporting on social media — on Instagram, Facebook, and using the Twitter hashtag #MatchMyMix.