Frequently Asked Questions

 

What are Stem cells and bone marrow?

Bone marrow is a spongy tissue found inside bones. Stem cells are found in your bone marrow and have the power to heal a wide range of diseases. Blood cancers, such as leukaemia and lymphomas, are the most well known. There is also several bone marrow and blood diseases. Bone marrow and stem cells are bona fide miracle workers for patients living with these diseases.

Does donating stem cells hurt?⁠

For 5 days leading up to donation, donors are given injections of a drug called filgrastim to increase the number of cells in their bloodstream, that are used for transplant. This may result in aches/pains or headaches but can be relieved by paracetamol and disappear shortly after the donation. Some other common side effects, during this pre-donation period, are nausea, trouble sleeping or tiredness. Less than 1% of donors experience serious side effects. During the actual donation process some people experience tingling, mild muscle cramps and bruising at the needle site.

Age restrictions? But why?

When it comes to bone marrow and peripheral blood stem cell (PBSC) donations, physicians prefer donors 18 to 30 years old because research shows that patients do better with younger donors. Younger donors have fewer health complications and are often more readily available to donate as a result. 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. Strength to Give is a charity with limited resources, and they need to focus on recruiting the people most likely to be chosen as donors.

Of course, people older than 30 make good donors too, and that’s why we are still accepting donors up to 35 and ask potential donors to stay on the registry until they reach their 60th birthday.

what am i being tested for when i join the registry?

When you join the registry a sample of your DNA will be collected via saliva or blood. This sample will be used to determine your tissue type. Doctors look for a donor who matches their patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type. The closer the match between the patient’s HLA markers and yours the better for the patient and their immune function.

can i give to a specific person?

No. When you register to become a donor, you do it to save anyones life. It is understandable that you may have been driven to join the registry because a loved one is sick but unless you have the same parents the chances of you being a match is tiny. When you register you accept that you may be called upon to save anyones life.

Am i only registering to donate in australia or is it international?

There are 53 countries that have one or several national stem cell and bone marrow registries. Instead of working alone, we have decided that linking all the registries will give us access to many more potential donors. This allows patients from Australia and all over the world to access more donors and more HLA types, increasing their chances of finding a perfect match.

what are the odds of actually being asked to donate?

It depends on many factors, including the size of the registry, your age and your sex. The odds aren’t super high, but they sure are higher than winning the lottery.

what happens if i am selected to be a donor?

If you match with a patient, you will be contacted to confirm that you are healthy and still willing and available to donate. A blood sample will be taken to confirm the match. Before donating, an independent specialist will assess you medically, explain the process thoroughly and answer any questions you have.

can i change my mind about donating?

There are many reasons why you may need to decline at the time of the donation request, such as poor health, family or work commitments or if you have reservations about donating. However, once you have agreed to act as a donor it is vital to follow through with the process because there is a point of no return for the patient.

About a week before the transplant the patient has chemotherapy and/or radiotherapy to destroy the diseased bone marrow. This treatment can be fatal unless healthy cells are transfused. At this time you have a moral obligation to proceed.

what if i say no?

You will always be free to decline to donate and your answer will remain confidential. However, saying no can have very serious consequences if you withdraw once you have been identified as someones match.

So before signing up, especially if your friend or relative is sick, take the time to think things through. Also if you have signed up and realise you are not up for it, don’t worry, just contact join@strengthtogive.org.au as soon as possible so they can remove you from the registry.

how does donation work?

Donating stem cells used to be a huge deal. Here in Australia 90% go blood stem cells donations are like a long blood donation, with the donor fully awake. In about 10% of cases, often when the patient is a child, a one day surgical procedure will be needed to extract bone marrow from the hip bone. This is done under general anaesthetic. Regardless of how the donation is done the body replenishes the donated stem cells in about 4 to 6 weeks. The patients doctor will request the type of donation that is best for the patient.

DKMS Image - PBSC Donation

DKMS Image - PBSC Donation

Here is a quick explanation of both techniques:

Method 1– Peripheral blood stem cell (PBSC) donation involves stimulating the production of stem cells to release them in the blood stream. A medical professional (nurse, GP, yourself potentially!) will oversee your first injection, and you will receive a 4 day course in the lead-up to your donation. On the day of the donation the collection nurses will take your blood through a needle in one arm. The blood is passed through a machine that separates out the stem cells needed for the transplant. The remaining blood is returned through the other arm. This is how 90% of donations work.

Method 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. General anaesthesia is always used for this procedure, so donors feel no pain during marrow donation and usually just a dull achy feeling for a few days after. Bone marrow is usually preferred when the patient is a small child. Wait, what? That’s right—there’s a lot of little kids out there waiting for your healthy cells! So stop being a scaredy-cat and hop into that stylish hospital gown.

what happens after i donate?

After your donation you will be temporarily unavailable for the general population to ensure you’re available for the same patient in case they need a second transplant or other matched blood products. If this is the case you may be asked to do another full donation or a blood donation. After two years you will automatically become available again for other patients.

Your health and safety after the donation is just as important to everyone as your health before. Therefore, someone will be in contact with you within 3 days of the donation and weekly until you are fully recovered and have resumed normal life. You will also be contacted after 3 months and then annually for up to 10 years. If you have donation blood stem cells then you will also be asked to see your general practitioner (GP).

can i donate more than once?

If you have donated in the past and found to match another patient needing a transplant you can donate again. Occasionally you may be asked to donate a second time, for the same patient, if the first transplant did not take or the patient relapses.

can i contact the patient?

Strength to Give are happy to pass on anonymous cards or letters, just make sure that you do not include any identifying details like names, locations or birthdays.

If you exchanged a few letters with the patient and you are keen to share your personal contact details you’ll need to sign a consent form authorising the release of your personal information. As long as two years have passed since the donation, and the patient is also keen, then you will both receive these details and can get in touch directly.

Sadly some registries do not allow any correspondence or contact between donor and patient, so if your patient lives overseas then contact may not be possible.

Strength to Give Donor Registry Kit

Strength to Give Donor Registry Kit

Strength to Give Donor Registry Kit

Strength to Give Donor Registry Kit