Alma was diagnosed with a rare hereditary disease known as Fanconi anemia at just one year old. In 2015, her older sister Mar, who was four, had received the diagnosis in a hospital in La Palma. Confirming that she would suffer the same fate did not take long for the healthcare professionals. Both girls had problems growing since they were in the womb and similar facial features, so after some medical tests, they quickly named her pathology. "The diagnosis was not delayed either because the hematologists here know the disease, they had the advantage that there are other cases here," explains her mother Anafer during an interview with La Voz.
With half of her roots in Lanzarote and the other half in La Palma, this girl has grown up on the beautiful island and lives as normal a life as possible, attending school. Her parents had their third child, Ángel, through in vitro fertilization, and the little one's stem cells served to save the older sister's life. However, Alma's case is more complex because the human leukocyte antigens (known as HLA, which are the DNA of the blood) of her brother are only 50% compatible. "It would be a tougher transplant because the girl has to be more suppressed, the chemotherapy she receives is greater, and she has a higher risk of complications," explains her mother, who is also a doctor.
Anafer explains that in transplanted people there is a risk of suffering from graft-versus-host disease, which is a complication that occurs after receiving a bone marrow or stem cell transplant and can be fatal. When there are allogeneic transplants, where the transplanted person receives stem cells from a donor and not their own cells, this risk may arise. "That can happen to you with any transplant, even with a compatible one, but if you start with a donor who is worse in this case, then the risk is greater," she adds on the other end of the phone.
In addition to the difficulties of finding a highly compatible donor within the family, the pathology suffered by the minor, Fanconi anemia, increases the possibility of developing a tumor. "If you are also adding chronic inflammation, then we worsen the picture. Her best option would be to find a good donor, with high compatibility," she emphasizes.
This mother seeks to combat the myths about bone marrow donation and ensure that more people can be part of the process. "The more people we are, the better. Today it's Alma, but tomorrow it could be anyone," she adds. She also explains that the donation of bone marrow, a spongy tissue that is in the center of most bones and produces different types of blood cells, is "through peripheral blood." Specifically, the patient receives medication "to produce more cells," blood is drawn from one arm, passes through a machine where the stem cells remain, and the rest is returned through the other arm. This procedure only lasts three hours.
"Perhaps it would be more important to say that it is a stem cell donation rather than bone marrow, which is so confusing." She also adds that to be a bone marrow donor, you can donate more than once because the body regenerates it.
How to become a bone marrow donor?
The regional transplant coordinator of the Canary Islands Health Service, Gemma García, explains that "the probability of finding a donor within the family is only 25%" and that to address the lack of donors, there is a World Bone Marrow Donor Registry.
To be able to donate bone marrow, you must be between 18 and 40 years old. Interested people should enter the website canarias.medulaosea.org and fill out the registration form where different personal data and possible diseases that may contraindicate being a donor are asked. The entire process is anonymous and altruistic; you cannot select which specific person you are going to donate to.
"Once that registration is completed, the autonomous transplant coordination contacts the user to complete the registration and take a small blood sample," indicates Gemma García. This extraction, which is carried out on all the Canary Islands, including Lanzarote, is a blood test of histocompatibility antigens, which allows obtaining the DNA of the blood and "assessing the compatibility between the recipient and the donor." After that, a person can officially become a bone marrow donor and enter the World Registry.
More than 42 million donors in the world
The World Donor Registry has 42 million people registered to donate, and "if at some point someone is compatible with your marrow, then a series of more specific serology and immunity tests are done to be able to reach that extraction," continues the transplant coordinator in the islands. According to data from the Ministry of Health, in Spain there are already half a million bone marrow donors. Despite these figures, currently people who need a donation have a 1 in 3,500 chance of finding their donor in the world registry. "The more we are, the better," encourages Gemma García.
Before, to donate bone marrow, it was necessary to puncture the hip bone, but now it can be done by apheresis, a process to extract stem cells or other components from the bloodstream while the rest of the blood is returned to the body. This procedure, less invasive than the previous one, "entails a recovery for the donor that is much faster, much less painful, and with many fewer complications," with medical leave of around a week.
