30 percent of those in need never find a donor • “Means an awful lot”
Elian Sundén is an ordinary guy who goes to school, works out and loves music. It was this spring that life turned upside down for him when he found out that he was affected by an unusual blood and bone marrow disease, aplastic anemia, which means that he is in urgent need of a stem cell operation. The disease means that his production of blood cells is low and that he therefore has a low number of blood cells in his blood.
– Sometimes it feels unreal and it’s unfair, of course you think about it every day, but then there are some days that work quite well, like none of this is true, says Elian’s mother Therese Wahlgren Sundén.
Elian has been getting worse and worse every day – but recently the news came that the doctors found a donor who is a 90 percent match. Due to his illness, he needs a bone marrow transplant and the road to finding a donor has been long.
Many have become involved in finding donors
Elian’s story received a lot of attention when mother Therese took to social media and shared Elian’s illness and appealed for more people to register in the Tobias register, which is the Swedish register for donors of blood stem cells. A month after the Facebook post, 3,000 new people had registered.
Elian’s friends Hampus and Charlie have also got involved. They have gone around shopping centers in Kalmar and spread information about the Tobias register to get more people to register as donors.
– I appreciate it immensely. It means a lot to me and to many others as well. But especially when it’s one’s friends who do it, it feels really good, it calms you down, says Elian.
Had no idea about the disease
He says he discovered the disease after the lymph nodes under his arms had been swollen for a long time and he went to the health center to have it checked out. Then the blood values were so low that it had to be checked in hospital and at first it was thought that it was leukemia.
– I had no idea what it was, I had never heard of it before because it is so unusual, says Elian.
In time, Elian received more information and was able to process what the disease entails. Mother Therese struggles with the will to protect Elian while at the same time wanting his life to continue as it always has.
– The balancing act is completely unreal because a parent’s biggest nightmare is that the children will not have friends or that they will not be invited to parties. Now it’s more like I get really nervous when he gets invited to a party and then I immediately think: “what if it’s someone who’s infected with something he can’t resist”, says Therese.
Elian himself says that he has taken one thing at a time and tried not to worry unnecessarily.
30 percent never find a donor
Approximately 250,000 people are registered in the Tobias register and hundreds are waiting for a matching donor somewhere in the world. The lack of non-European origin among donors means that only three out of ten patients of non-European origin find a matching donor. The same figure for those of European origin is seven out of ten.
At the same time, the proportion of women makes up 70 percent and men 30 percent of everyone in the Tobias register. Therefore, more young guys and people of non-European origin are needed.
– For a donor and a patient to match so that they have as similar a tissue type as possible. It’s something called HLA. Unfortunately, it is not like blood groups that there is a limited number of HLA types, but there are literally millions of different HLA types, says Hannah Gustafson, marketing and communications manager at the Tobias registry.
Three months of isolation after the transplant
30 percent of all patients never find a donor and initially Elian was part of them. The need for donations is great, and Hannah Gustafsson tells us that this year alone they have arranged 250 donations in Sweden and throughout the world tens of thousands of bone marrow transplants take place annually.
On January 7, Elian begins chemotherapy to prepare for his bone marrow transplant. After that, three months of isolation await. Elian says he is a little nervous, but mother Therese is terrified.
– I am afraid that the process will not be able to go as it is expected. I am extremely grateful for the medical help we have received and the care around it all. This has been amazing. But there are also natural explanations for why you are so nervous, says Therese.
This is how you join the Tobias register
Register by filling in a short health form at tobiasregistret.se. When the health declaration is completed and approved, they will send you a top-up kit.
You top the inside of the cheek and send it back to the Tobias register. The tops are analyzed to obtain your unique profile (HLA type), which is then stored in a secure database. That value is then matched against patients.
By being in the register, you are searchable for patients worldwide. Should you match with a patient, the Tobias register will contact you about the next step.
Source: Tobias register
Today 19:51