Make sense of all the medical mumbo jumbo thrown your way. And if you don’t find what you’re looking for here, don’t hesitate to ask. That’s what we’re here for.
WHAT MAKES THE PROCESS INTERNATIONAL?
When you sign up for your country's donor registry, you’ll be entered into an international donor database, or as we like to call it, the International Pool of Superheroes.
There are 54 countries that have one or several national stem cell and bone marrow registries, and each has access to the others' donors. Instead of working in silos, they decided that linking their registries could give them access to way more potential donors. This allows patients from all over to tap into a larger number of DNA samples, increasing their chances of finding their perfect match. The expression cellmates takes on a whole other meaning, doesn’t it?
You can access the complete list of donor countries here.
What's this umbilical cord business?
You might have heard that blood contained in a baby’s umbilical cord at birth can save lives. All true! It’s super-rich in blood stem cells and it’s the next best thing after a living donor. Lots of patients who don’t have a good match rely on these baby cells.
Future moms should talk to their doctor to find out if their hospital has a cord blood program: What would otherwise be destroyed can save a life.
This is becoming increasingly important with the rising number of mixed-race babies with an uncommon genetic background.
Every new mom can give life again—but this time, without any of the pain of childbirth!
WHAT IF I SAY NO?
You’ll always be free to decline to donate, and your answer will remain confidential. But there’s no easy way to say this: by saying no, you’re robbing a sick person of what might be their only chance. Being someone’s match means YOU are their best hope of channelling their inner Bee Gees and staying alive.
So before signing up all gung-ho because your cousin is sick, take the time to think things through. And when you do sign up, do it to save anyone, anywhere, from the moment you register until your 60th birthday. Yep, it’s one long commitment. And between you and us, saying no because you don't feel like it anymore would make you a horrible person.
Also, if you’ve signed up and realize you’re not up for it, contact your country’s registry and withdraw your name. That way, we’ll all avoid an extremely awkward situation.
What are the odds of actually donating?
It depends on many factors, including the size of your country’s registry, your age and your sex.
For instance, in the UK, there are 550,000 registered donors. All donors on this list have a 1-in-800 chance of donating in the next 5 years. But if we focus on stronger, younger donors and just look at men aged 16-30, their chances go up to 1 in 200.
The odds aren’t super high, but they sure are higher than winning the lottery!
Can I give to a specific person?
Plainly put: Nope. When you register to become a donor, you do it to save anyone’s life. We understand you might be driven to join because a loved one is sick. But the chances of you being a match for them are super extra tiny. When you register, you accept that you might be called to save the life of someone you’ve never met, even someone from another country.
So please, before registering, consider that you might not save YOUR friend or cousin, but someone else’s.
HOW BAD IS IT FOR ETHNIC GROUPS?
According to statistics from Canadian Blood Services and Hema-Quebec, the Canadian national bone marrow registries, Whites make up approximately 70% of registered donors. And pretty much all registries are the same. This leaves Latinos, Asians, Indigenous peoples, South East Asians and those from Black communities very exposed. Why? Because all these communities are under-represented in the worldwide stem cell donor registries. That’s basically saying that of two people with the exact same disease, the person who isn’t white has a much smaller chance of surviving. And at Swab The World, we simply cannot accept this.
Bone marrow, stem cells, spinal cord. What's the diff?
Bone marrow is a soft and fatty substance located in the cavity of bones, where blood cells are produced. Think of it as the red and white blood cells and platelets factory. If you donate your bone marrow filled with stem cells, it will be taken out of your pelvic bone under general anesthesia.
Stem cells are undifferentiated cells that can develop into a specific type of blood cell later on. They are, in essence, baby cells that haven’t yet decided what they want to be when they grow up, and can become anything they set their mind to. They differ from other cells by their ability to replenish themselves and divide into many more cells. These cells have the power to heal by repairing and replacing human tissue.
The spinal cord has nothing to do with blood stem cells. Guess it's been a while since your biology class! The spinal cord is a tubular bundle of nervous tissue stemming from the brain to the vertebral column. We promise not to touch it!
What diseases can be treated by a stem cell transplant?
Stem cells have the power to heal a wide range of diseases. Thanks to science, new discoveries are made each year, meaning more and more conditions can be treated with stem cells from bone marrow and peripheral blood.
Blood cancers, such as leukemia and lymphoma, are the most well-known. There are also several bone marrow diseases, such as severe aplastic anemia, sickle cell disease or inherited immune system and metabolic disorders, to name a few. Blood stem cells are bona fide miracle workers for patients living with these diseases. And the good news is that the list of diseases that can be treated with them keeps getting longer!
How does donating work?
Donating stem cells used to be a huge deal. But boy, have times changed! In most countries, stem cell donations are mostly done through a process similar to long blood donation, with the donor fully awake, watching Netflix and eating chocolate bars (yes, plural).
In only about 15% of cases, a one-day surgical procedure will be needed to extract bone marrow from the hip bone. Don’t worry: sounds scarier than it is. Regardless of how the donation is done, the body replenishes the donated stem cells in about 4 to 6 weeks.
Here’s a quick explanation of both techniques.
1- Peripheral blood cell (PBSC) donation involves stimulating the production of stem cells for a few days to release them in the bloodstream, then removing a donor's blood through a needle in one arm. The blood is passed through a machine that separates out the stem cells used in transplants. The remaining blood is returned through the other arm. This is how most donations work.
2- Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor's hip bone using needles. Anesthesia is always used for this procedure, so donors feel no pain during marrow donation. This procedure is usually preferred when patients in need of a transplant are children. Wait, what? That's right—there's a lot of kids out there waiting for your healthy cells! So stop being a scaredy-cat and hop into that hospital gown.
YOU and only you can choose your donation method. You’re the boss of you.
If I share my DNA, how do you ensure my privacy?
Super easy: we don’t even come close to your genetics data. We don’t see it, we don’t collect it, we don’t touch it, we don’t handle it. We’re a communication channel between you and all registries. Your DNA doesn’t transit through Swab The World at any time.
Why do men make better donors?
It's not a matter of quality, but quantity. By being on average larger, men can give more stem cells. They also offer better patient outcomes post-transplant, for a variety of reasons that pertain to how immune reactions occur.
Guys, don’t miss your chance to give life!
Can members of the LGBTQ+ community become donors?
Unlike blood donations, men who have sex with other men, gay, bi or straight, can sign up to become donors in pretty much all registries.
As for transgender people, registries all over the world are looking into it, but the initial response seems to be to take it case by case. You should contact your country’s registry, but there are no generic reasons why LGBTQ+ members should be turned away.
So do sign up, LGBTQ+ peeps!
Does it hurt?
We’ll be 100% honest on this. It’s not NOT going to hurt. Some things might be unpleasant or uncomfortable. But actual punch-in-the-gut pain? Nah.
If stem cells are retrieved via peripheral blood stem cell (PBSC) donation, there ARE going to be a few needles involved and some bone pain. But what’s a few pricks in your healthy arms compared to fighting for your life?
If the surgical procedure is chosen, you won’t feel a thing, as anesthesia is mandatory. You will feel tenderness in your hipbone for a few days after the procedure. Like a bruise, or like when you start exercising again after spending a few months glued to your couch. Nothing to call your mom about, especially knowing that this mild pain is your price to pay to become a superhero.
Why are there age limits?
Statistics show that younger people are more likely to be chosen as donors in life-saving transplants. Of course, people older than the age limit in their country can make good donors too, and that’s why we ask potential donors to stay on the registry until they reach the donor age limit (usually around 60 years old). But younger donors have fewer health complications that would prevent them from donating and may provide better transplant outcomes.
Every day counts for someone in desperate need of a lifesaving transplant, so finding out a donor can’t proceed can waste precious time. What’s more, it costs a substantial amount of money to add each donor to the register. As charities with limited resources, the national organizations need to focus on recruiting the people most likely to be chosen as donors and who are truly committed.