If you get a match
If you're matched, it could mean that you are the only one in the whole world for that particular patient. You could be their only hope.
There's about a one in 1000 chance of being matched, meaning that most people who join the Tobias Registry will never be.
Here you can read more about what happens if you get a match.
Step 1
We will get in touch
In an initial conversation, you can choose whether you want/can proceed in the process. If you choose to proceed, we need to ensure that you and the patient are truly a good match. This is done through blood tests, a health declaration, and a physical health examination.
Health Declaration
To proceed, we will ask you to fill out a health questionnaire. You can do this digitally on My pages. The questions are about your health status, for example, if you are taking any medications, if you have had a serious illness in the past, or if you are pregnant. Your responses are handled confidentially.
Blood test
To make sure that you and the patient are a good enough match, we will ask you to provide a blood sample. The blood sample will be taken at a regular health center, blood donation center, or laboratory near you.
If you have been asked in an email/letter to contact us: we ask that you call us as soon as you can so we can tell you more and also schedule a time for your test.
If we ask you by email/letter to have a blood test taken without needing to contact us:you can either book an appointment yourself via 1177 or use the walk-in service if the testing site offers it. You are of course very welcome to call us if you have any questions!
Blood tests are taken, for example, in order to:
- confirm your HLA values – that is, the “codes” on the cells that must match between donor and patient
- check that you don’t have any diseases that can be transmitted through blood, such as HIV or hepatitis
- to see whether you have previously had certain common viruses, as this may be important for the patient’s treatment
- find out your blood type
All of this is done to protect both you and the patient and to be completely sure that the donation is safe and works as well as possible.
HLA antigens are like small markers, or ID tags on your cells. They show which HLA type you have – something you inherit from your parents.
There are many different variants, which can make it difficult to find the right match for a transplantation. The chance that you and a sibling have the same HLA type is about 25%, that is one in four.
Stem cell transplants are performed to treat certain types of cancer or blood diseases. Currently, leukemia is the most common disease where blood stem cells are often used as a last resort.
There are many other diseases that can be treated in the same way, including severe anemia, immunodeficiency diseases, and metabolic disorders. In addition to leukemia, examples of cancers treated with stem cell transplantation include lymphoma and myeloma.
Currently, a stem cell transplant can be potentially life-saving for around 70 different diseases.
If you and the patient are not a sufficiently good match, or if there are other reasons why a donation is not suitable, the process will be terminated. You will then become searchable in the registry for other patients. It's good to know that it can take a long time from when you give a blood sample until you receive information, sometimes several months. Approximately 1 in 5 who receive the call about a match go all the way to donation. Regardless of the outcome, you are a real hero for participating and giving hope.
Health check-up with a doctor
If the blood test looks good, we will schedule you for a free health examination at a university hospital. There, it will be ensured that you are completely healthy and can donate. You will meet with a doctor, ask questions, and learn more about the donation itself.
The examination is carried out by a doctor, you receive important information and have the opportunity to ask questions.
The doctor performs a comprehensive health examination, including checking your ECG and taking virus tests, all to make sure that you are in full health and that there are no obstacles to you donating.
No, you cannot choose the hospital, but we will of course try to book you at the hospital that is closest. However, since we collaborate with all our university hospitals across the country (from Umeå to Lund), sometimes you may need to travel a bit further depending on where you are booked. We will, of course, try to book you accordingly.
Tobias Registry will ofcourse cover all expenses related to this.
No, you always donate at a university hospital in Sweden. Couriers collect the cells and travel to the country where the patient is.
Donating stem cells is completely voluntary! From the time you register until you might be contacted by us, several years can pass. By then, your life may have changed and for various reasons you no longer wish or are able to donate - in that case, it's just a matter of saying no. You have not committed to anything. However, what we do need is a prompt response, so we can pass the information on to the patient's treating physician.
If you accept but feel hesitant during the process, it's better to withdraw early rather than late. Before your donation, your patient is also prepared with harsh treatments to remove their own immune system. This is done so that your cells will not be rejected during the transplant. If you withdraw late in the process and the patient does not receive stem cells, there is a risk that this person may die.
Step 2
There are two ways to donate
The most common method is to donate through blood. In rare cases, donation is done through bone marrow. You decide for yourself which method you are comfortable with and will be informed well in advance which option is preferred.
Donation via blood
Approximately 90% of all donations are made via the blood and collected using centrifugation technology (apheresis). This method is called peripheral blood stem cell collection and usually takes between 4–6 hours. You can often go home the same day.
Increase the number of stem cells
Four days before the donation, you will receive injections of a natural body hormone called G-CSF. This hormone increases the number of stem cells in the blood. During these days, you may experience flu‑like symptoms, such as headache and body aches. Ordinary painkillers containing paracetamol (e.g. Alvedon® or Panodil®) usually provide good relief. The symptoms often disappear within a couple of days after the treatment is finished.
Thousands of healthy people have received G-CSF without any harmful effects being found.
If you are eligible for donation and will donate through blood, you will receive injections of G-CSF prior to the donation, a substance that resembles the body's own growth protein. This causes the bone marrow to produce extra stem cells and release them into the blood.
The injections are taken once a day for 4–5 days prior to the donation, usually under the skin of the abdomen. You can administer them yourself or get assistance.
You may experience temporary side effects, such as muscle pain, headache, or fatigue. The same feeling in the body that one can have when having the flu. Symptoms usually subside within a few days.
G-CSF does not affect health in the long term and the body recovers quickly after the donation.
Most people have no problems working or studying while taking G-CSF. However, most experience temporary side effects that can be bothersome but are alleviated with paracetamol. Depending on the type of work one has and how troublesome the side effects are perceived to be, sick leave may be necessary.
On the day of donation
The donation takes place at a university hospital. Your blood is led through a tube from the crook of one arm into a machine that collects the required amount of stem cells. Then, the blood is returned to your circulation through a similar plastic tube in the other arm's crook. It usually takes between 4-6 hours, and you can go home the same day. If you want to bring a friend or relative during the donation, that's perfectly fine.
There are no known long-term risks associated with donating stem cells via the blood.
- 4–5 days before the donation, you need to take a natural body hormone called G-CSF by injection, usually in the stomach. Many people may experience muscle pain, headache, or feel tired, similar to having the flu. Painkillers such as Alvedon help, and the side effects disappear when you stop taking G-CSF.
- The donation itself usually takes between 4–6 hours (in rare cases it can take two days). Most often, stem cells are collected through thin tubes in the arms, but sometimes a thicker tube is needed, for example in the groin. It is common to get bruises where the needles were inserted. In rare cases, a tube in a larger blood vessel can carry a risk of bleeding or infection.
- During the collection, a substance is used to prevent the blood from clotting – it may feel like tingling in your body, but this passes immediately afterwards.
If you have an increased risk of certain inflammatory diseases, the hormone (G-CSF) can trigger this, and in that case bone marrow donation is recommended instead.
Donation via bone marrow
In about 10% of all donations, the stem cells are instead taken directly from the bone marrow. The procedure takes about an hour and is performed in the hospital’s operating department, and you will be under general anesthesia.
About bone marrow donation
When donating bone marrow, you are admitted to the hospital, usually for 1–2 days. The donation is done by doctors who, using two syringes, draw out bone marrow from the back part of the pelvic bone crest (and not from the spine, as many people think).
You are admitted the day/evening before and stay overnight either in the ward or at a nearby hotel, and you usually stay one extra night after the donation so they can make sure you are doing well.
If you feel well and want to go home the same day as the donation, that’s fine as long as the doctors approve it.
We do everything to ensure that the risks are as small as possible for you as a donor. That's why our health check is so thorough – we want to be sure that you can handle the procedure. But it can never be completely risk-free.
Serious complications are very rare, but since a bone marrow harvest is a minor surgery, problems can sometimes occur, such as reactions to the anesthesia or an infection.
The technology used today is both safe and well-tested. Most people experience tenderness in the hip or lower back for a few days and make a full recovery within a week. Common over-the-counter pain relievers are usually sufficient. Some also feel a bit tired for a few days, but it varies from person to person.
The Tobias Registry will follow up with you until you are fully recovered. As a donor, you also always have the opportunity to call the hospital for medical advice even after the donation.
No. Bone marrow and spinal cord are not the same thing. Bone marrow is not collected from or near the spine or spinal cord, but from the iliac crests which are located above the gluteal muscles. Therefore, the donor's spinal cord cannot be damaged and there is no risk of paralysis.
Step 3
You have now potentially saved someone's life!
You have now potentially saved someone's life! Brag about it to everyone you know.
Your cells are sent to the patient
The cells are transported to the patient’s hospital by a courier. In most cases, your blood stem cells are given to the patient intravenously within 48 hours, as a drip.
It may take some time before we know how the patient is doing, but regardless, you have done something invaluable that you should feel proud of.
The patient and donor are anonymous to each other.
After a year, you may sometimes receive an update about your patient, but the rules vary between different countries and it's not certain we will get a response. Contact the Tobias Registry if you want us to reach out with the question to the patient's hospital.
You can always write anonymous greetings to your patient through the Tobias Registry. The letters are reviewed to ensure that no names or places are revealed. Sometimes you get a response, and it happens that donors and patients exchange letters in this way.
After at least one year, in some countries, it may be possible to make direct contact if both you and the patient wish and sign a consent form. The rules vary greatly between different countries – in some, confidentiality is never completely removed, while in others it can happen after 1–5 years.
One can always write messages to the patient. These letters should be completely anonymous and will be censored if there is any personal information or anything else that can identify a person. The Tobias Registry will convey your greeting to the patient's hospital for forwarding to your patient. Hopefully, you will receive a response from your patient, and it happens that donors and patients exchange letters with each other in this way. Of course, it also happens that the patient wants to contact their donor, and in that case, we will forward this to you.
After a certain period of time has passed (at least one year), there is sometimes the possibility to waive confidentiality so that direct contact can be made between parties, if both agree. Both parties must then sign a consent for this, where they also choose which information they wish to disclose. Different countries have very different rules regarding this, and we always comply with the restrictions of your patient's country. Some countries never approve confidentiality waivers, while others may approve it after a certain number of years, usually between 1 – 5 years.
No, you do not earn any money by donating stem cells – it is entirely voluntary.
Should you become eligible for donation, the Tobias Registry will assist with booking travel and any hotel stays. We also reimburse expenses for food and parking, etc.
Lost work income is compensated by the Social Insurance Agency, and the Tobias Registry assists you with the necessary forms.
Feel free to boast and inspire others!
When more people understand how a stem cell donation works, the likelihood increases that more will participate. We are therefore happy to share your experience through our channels. Document your experience and email us.
And of course, share on your own social channels!
