FAQ’s

Easy – you may be the only person in the world who could save the life of someone with a blood cancer or disease that can be treated by a stem cell transplant.

Joining the registry could be one of the most generous things you ever do.

Why do people need a stem cell or bone marrow transplant?

Bone marrow is the soft, spongy tissue found in the middle of the bones in your body, and it has one job to do – to produce stem cells, stem cells that turn into every type of blood cell that is circulating in your body. From the red blood cells which transport oxygen and carbon dioxide to and from your lungs, to the platelets which help you stop bleeding, to the white blood cells which become your body’s immune system, they all start off as a stem cell in your bone marrow. But some diseases stop or alter the healthy production of blood cells so they can’t do their jobs. When this happens, people can quickly become sick. When medicines and treatments stop working, sometimes the only option left is to have a stem cell transplant. This is where the sick and diseased bone marrow and stem cells are destroyed and replaced with healthy new stem cells from a donor like you, resetting the immune system and curing their disease

What diseases could my stem cells be used to treat?

The first stem cell transplant was used to treat a blood cancer called leukaemia, but since then transplants have used to treat many more diseases. Other blood cancers like multiple myeloma and  lymphoma, and blood disorders like myelodysplasia (MDS) are often treated with a stem cell transplant when treatments like chemotherapy no longer work. Blood disorders such as aplastic anaemia and immune deficiencies like chronic granulomatous disease are increasingly being treated using donated stem cells.

Is there a matching donor for everyone who needs a transplant?

With 170,000 people signed up on the Australian Bone Marrow Donor Registry, and over 36 MILLION people collectively signed up to registries around the world, you would think that everyone needing a donor would easily find one, but sadly this is not the case. You can only donate to someone from the same ethnic background as you, as you need to share the same tissue type. Ultimately it’s a numbers game – the more people registered, the greater the chance everyone has on finding that perfect match.

How many people are on the Australian Registry?

The Australian Bone Marrow Donor Registry currently has around 170,000 donors signed up. However, only 4% of these are ideal donors (that is males aged 18 – 35), only 22% of these are ethnically diverse and only 1% are from an Aboriginal or Torres Strait Island background. We know we can do a lot better than this!

Could the person I donate to be in another country?

Absolutely – how cool is that? There are 53 countries around the world who have at least one stem cell and bone marrow registry and they are all linked so that people needing a transplant have the best chance of finding a match. This means that the Australian Bone Marrow Donor Registry is in contact with the other 52 registries around the world, and your stem cells may end up being the perfect match for someone in a country you’ve never even been to.

Who can become a donor?

Anyone who is aged between 18 and 35 and in good health can join the Australian Registry. You’ll stay on the Registry until the age of 60 and be committed to donating stem cells or bone marrow if you come up as a match until then, but the older you get the less likely you are of being chosen as a donor.

Donating stem cells does involve being pricked a few times with needles so please don’t sign up if you think there is a chance you could bail just because of a few pricks! We would much rather you help us raise money or donate $100 which we can use to find someone to sign up in your place.

 

Why are you recruiting 18-35 year old’s?

Results have shown that the best patient outcomes come from stem cells donated from  younger donors.

Younger people tend to 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 causes more stress to everyone involved and wastes precious time. Because of this, younger donors are way more likely to be chosen by doctors. TLR has limited resources so have chosen to focus those who are more likely to be picked, and more likely to give patients the least complications and the best possible chance of a full recovery.

 

Can I still join if I’m over 35?

You can still sign up to be a donor up to the age of 45, and will remain on the registry until the age of 60. People over 30 can still make good donors and help save a life. However, the older we get the greater the chance of having more health complications which could potentially exclude us from being able to donate, but there are still many other ways you can help.

 

Why do men make better donors?

We know it sounds a little sexist, and let us start by saying that women can make just as good stem cell donors as men, but biology does come into play. Many doctors will prefer to pick guys because they are generally physically larger than women and literally have more stem cells to give. They also tend to select males to avoid logistical issues if a donor is pregnant or breastfeeding, but one of the main reasons is because once a woman has been pregnant, her immune system produces new antibodies which can increase the risk of a major complication in transplant recipients called Graft vs Host disease (GvHD), a form of rejection. This can be very serious for some and even fatal for others, like Trace. But as we said at the start, young, healthy women who haven’t been pregnant can still make just as good donors as males which is why we encourage both men and women to sign up.

 

Don’t you want to recruit women?

We absolutely encourage women to join the Australian Bone Marrow Donor Registry as they still can save someone’s life, just know that doctors will almost always pick a male over a female as males are generally much larger and can usually produce a larger volume of stem cells. Doctors also prefer men where there is a choice if a woman has been pregnant as the resulting antibodies which are produced can increase the risk of complications to the patient, and some like Graft vs Host Disease (GvHD) can be fatal.

 

Why do we need to recruit more men aged 18-35?

While men aged 18-35 are scientifically the most ideal donors, they only represent 4% of the 170,000 who have already signed up to the Australian Registry. That is a SUCH a low representation and a statistic we need to focus on. Women are far more likely to sign up and we would love to know why so we can address the issues the guys have.

 

Why do we need more people from ethnically diverse backgrounds?

You can only donate to someone with the same tissue type as you, and you inherit half of your tissue type from your mum and the other half from your dad. This makes your ethnic background or mix of ethnicities vitally important.

The diversity in Australia is something which makes our country great, but it can also make it extremely challenging for some people to find the match they need. Ultimately it’s a numbers game – the more people from all backgrounds who sign up, the better each patient’s chance of finding that perfect donor so we encourage all people to sign up.

 

I’m a gay man, can I still sign up?

That’s a resounding YES! There were restrictions on gay men being able to sign up, until 2018 when cheek swabs were introduced as a new, quick and easy way of signing up. Stem cells don’t discriminate based upon your sexuality, and nor do we. Your stem cells can absolutely save the life of someone needing a transplant, just like anyone else’s.

 

What are the odds of me actually being asked to donate?

While there is a 25% chance of you donating to a brother or a sister, the chance of you being a match to anyone else is currently 1 in 1,500 people! That’s 0.066666666667%! The chances of you being a match are pretty low, but if you are that one, special person who can save the life of someone then we need you to be registered. By focusing on signing up younger people we are hoping to make those odds higher.

 

What diseases would exclude me from being a donor?

While we want to get as many people to sign up to the Australian Bone Marrow Donor Registry, there are some conditions and diseases which exclude you from being able to donate.

These include:

• Thalassaemia major, sickle cell disease, Fanconi anaemia or haemophilia
• If you have had an organ or bone marrow transplant
• If you have suffered from a stroke or heart attack
• If you have tested positive for HIV (human immunodeficiency virus) or HTLV (human T-cell lymphotropic virus)
• If you have had any past history of cancer, with the exception of two minor skin cancers – basal cell carcinoma (BCC) and squamous cell carcinoma (SCC). Pre-cancerous conditions like carcinoma in situ of the cervix are acceptable.

 

You can’t be a donor if you have autoimmune diseases such as:

• Systemic lupus erythematosus
• Multiple Sclerosis
• Rheumatoid arthritis
• Type 1 diabetes mellitus
• Ulcerative colitis
• Crohn’s disease
• Ankylosing spondylitis
• Scleroderma
• Sarcoidosis
• Guillain-Barre syndrome
• Immune thrombocytopenic purpura

 

Minor autoimmune diseases may be acceptable, including:

• Psoriasis
• Vitiligo
• Alopecia areata
• Coeliac disease
• Hashimoto’s thyroiditis, if thyroid function is stable on replacement medication
• Grave’s thyroiditis, if thyroid function is stable after treatment
• Pernicious anaemia, if successfully treated
• Sjoegren’s syndrome, in the absence of serious auto-immune diseases

How can I join the Registry?

Joining the registry has never been easier, and it can all be done online. Head to tlr.strengthtogive.org.au and enter your details. You will then receive a cheek swab kit in the post. 4 cheek swabs later, plus a simple application form to fill in, pop everything back in the reply paid envelope and in a few weeks you will be listed on the Australian Bone Marrow Donor Registry! It’s that simple!

 

Does it cost anything to join or donate?

No, it doesn’t cost anything to join the registry. The only cost to you will be some of your time. If you come up as a match, you will have to go see a doctor to make sure you are still healthy enough to donate, and if you are the process will take around a day and half in total. That’s a day and a half of your life to save the life of someone in need. The Australian Bone Marrow Donor Registry will cover all medical costs and travel to and from the donation centre. They will also cover the cost of accommodation and out of pocket expenses if you need to stay overnight, but you are doing this as a volunteer and the world needs more generous people like you. Such a small contribution for the ultimate gift, saving some’s life.

 

Do I get paid for joining or donating?

You will not get paid to sign up or donate your stem cells. This is a completely voluntary and a hugely generous thing you are doing. While you will not be out of pocket for any of the time spent throughout the whole process, you will not receive any money for being a donor. This is something people do to help others, those who want to give something back to the world, a gift that can literally save some’s life and we thank everyone who signs up for that.

 

What are you testing for with the cheek swabs?

The cheek swabs gather some of your cheek cells to test for your tissue type. Your tissue type is entirely determined by little proteins found on the cell surface of every cell in your body, called HLAs (Human Leukocyte Antigens). Half of these are inherited from your mum and the other half from your dad, so your ethnic background is very important in determining if you are a match to someone. These HLAs determine how the immune system will respond to meeting the patient’s cells so they need to be as close as a match for that patient to safely inherit your immune system and have the chance of returning to a healthy life.

 

How is my personal data stored and shared yet still kept private?

Your personal information including your tissue type is very important to the Australian Bone Marrow Donor Registry (ABMDR) and they recognise the importance of your privacy and protecting you and your family’s confidentiality. The ABMDR works closely with the Australian Red Cross Blood Service and a network of health professionals and partner organisations including overseas registries, but will never provide information which would identify you to people outside the ABMDR, the Blood Service, or the health professionals involved in looking after you throughout the donating process.

If you are identified as a potential match you name will never be shared with the patient or the treating team. The information provided to the other registries and treating doctors is only to enable them to confirm if you are a suitable match, and only the hospital and health professionals involved in the donation process will know who you are. The Registries full privacy policy can be viewed HERE https://strengthtogive.org.au/privacy-policy/

 

Can I donate for a specific person?

Sadly, no. While we understand many people are driven to sign up when a friend or family member is sick and needs a transplant, the chances of actually being a match (unless it’s for a brother or sister who sharea the same parents) is incredibly slim. When you sign up, you agree to be a donor for anyone, anywhere around the world, most often a complete stranger. Just remember that the person you donate to is someone else’s friend or family member, and is now is relying on you to be a lifesaver.

 

If I sign up will I definitely be asked to donate?

The chances of you receiving a call to say that you are one of those rare, special people who have come up as a match is incredibly small, only 1 in 1,500, or 0.66666667%. That being said, TLR is focusing it’s efforts on recruiting those more likely to be chosen by a doctor, those in the 18 – 35 age group, especially males. You will not hear from the Australian Bone Marrow Donor Registry unless you do come up as a match, but the fact you have signed up should make you feel proud that you are doing your bit, and can share this with others in your age.

 

Can I change my mind?

You can always change your mind. There are many reasons why people decide they can’t be a potential donor. A change in your health status, family or work commitments, or you may simply have decided that donating is no longer for you. BUT, and this is a big but, we would encourage you to let the ABMDR know as soon as you can to remove you from the Registry.

If you do come up as a donor and go through the testing process and agree, about a week before the donation day, the patient has a mega dose of chemo which will destroy all the damaged bone marrow and stem cells, which also destroys all the remaining healthy bone marrow and stem cells, leaving that patient with absolutely no immune system and no way of making blood. That patient is now entirely reliant on your stem cells being delivered otherwise they will die. So please know the importance of why you are doing what you are doing, at this point you literally have someone’s life in your hands, well in your bones.

How do I donate stem cells or bone marrow?

It all starts by getting tested with a simple cheek swab – well, four of them. This will determine your tissue type and if you come up as a match you will be contacted by a member of the Australian Bone Marrow Donor Registry.

There are two ways you can donate – for 90% of people, stem cells are collected directly from your peripheral blood, a simple process similar to donating plasma, just a little bit more complicated than donating blood. This process takes around 4 to 5 hours so you will need to take a day off work.

For the other 10% of people, doctors may prefer to collect your stem cells directly from the bone marrow in your hip bone. You will be under a general anaesthetic so you won’t feel a thing. Doctors will generally only ask to collect your stem cells this way if the patient is a child or the disease being treated responds better with stem cells collected this way. The transplant coordinator will always discuss everything with you and answer any questions you have, and will always remind you that you are doing something wonderful!

 

What happens if I get selected to be a donor?

If you come up as a match you will be contacted to check that you are still willing and available to donate. This could be years after you joined so you will need to have a blood test to confirm you are the match they need and a medical exam to make sure you are fit and healthy enough to donate. Your health is just as important as the patients. The medical team will be there to talk you through the entire process and answer any questions you have, and will remind you just what a wonderful thing you are doing.

 

How do I donate stem cells from my blood?

Around 90% of donors will have their stem cells collected directly from your blood stream. You will be given a series of 4 daily injections of something called granulocyte colony-stimulating factor (GCSF). This is a naturally occurring hormone which stimulates the production of stem cells in your bone marrow, so much so that they leak out into your blood system. A few people have mild flu-like symptoms and your joints in your shoulders and hips may ache a little, but it’s a small price to pay when you think about the patient and what they are going through.

On day 5 you are attached to a machine called an apheresis machine. Blood is taken through a needle in one arm, passes into the machine where it’s spun really fast to separate the stem cells out, they are collected, and the remainder of the blood returns into your body via a needle in your other arm. It takes around 4 or 5 hours from start to finish, and many describe the process as being a bit boring, so bring a laptop, iPad or a friend to pass the time. But to know you are potentially saving someone’s life is pretty very special.

 

How do I donate stem cells from my bone marrow?

Around 10% of donors will be asked to donate stem cells directly from the bone marrow in your hip. While this sounds quite confronting, you will be totally knocked out with a general anaesthetic and won’t feel a thing during the process. You will probably have a dull ache for a few days after. The procedure takes around one hour, and while most people will leave that same day, a few may need an overnight stay at the hospital. Doctors will usually only request this type of donation is the patient is a little child, or if the disease being treated has a better outcome with stem cells collected directly from bone marrow. Please remember you will always have the choice at the end of the day, but your medial team will be there to answer any questions you have.

 

Are there any side effects?

There are some side effects to donating, but they are usually minimal and such a small price to pay for saving a life!

When donating through the blood stream, the granulocyte colony-stimulating factor (GCSF) can cause your joints to ache a little, just like the day after a gym workout. Some people get mild flu-like symptoms for a couple of days but it quickly passes.

When donating directly from the bone marrow, you will feel a bit tired and groggy, like people do after any general anaesthetic. You’ll probably be a little bit sore and there’s a good chance there will be some bruising on the top of your bum where they collected the stem cells, but this will pass in a week or two. Regardless of how you’ve donated, you will also feel mighty proud of yourself, because you’ve just done something incredibly special and potentially saved someone’s life!

 

Can I change my mind?

You can always change your mind. There are many reasons why people decide they can’t be a potential donor, such as a change in your health status, family or work commitments, or you may simply have decided that donating is no longer for you.If you do chance your mind, we would encourage you to let the Australian Bone Marrow Donor Registry know as soon as you can to remove you from the Registry.

If you do come up as a donor and go through the testing process and agree to donate, about a week before the donation day, the patient has a mega dose of chemo which will destroy all the damaged bone marrow and stem cells, which also destroys all the remaining healthy bone marrow and stem cells, leaving that patient with absolutely no immune system and no way of making blood. That patient is now entirely reliant on your stem cells being delivered – otherwise they will die. So please know the importance of why you are doing what you are doing, at this point you literally have someone’s life in your hands, well in your bones.

What happens after I donate?

The Australian Bone Marrow Donor Registry is just as concerned with your health and safety so they stay in close touch with you after you’ve donated so that they can make sure you’re ok. They will check on you within 3 days of collection and weekly until you are back to your normal activities. They’ll contact you again after 3 months and then annually for up to 10 years to check your general health.

After you’ve donated your stem cells, you will be taken out of the general pool of potential donors. This is because you are kept on standby for the same patient who you have donated to, just in case they need a second transplant or other matched blood products. After two years, you are automatically placed back in the general pool of potential donors.

 

What are the side effects of donating?

For 90% of people donation will be through your blood. Towards the end of the course of the 4 daily injections of granulocyte colony-stimulating factor (GCSF), your joints may be a little sore as this is where the stems cells are being produced. Some people get mild flu-like symptoms, but these usually go away after a few days. It’s a small price to pay for saving some’s life. 

After a bone marrow donation, you will probably have some bruising on the top of your bum and will be a bit tired because everyone does after having a general anaesthetic, but will generally feel back to normal within a week or so. You will also be asked to see your GP after you have donated. The Australian Bone Marrow Donor Registry and donation team will stay in regular contact for a while to make sure you are ok. You can expect a call within 3 days and weekly after that until you all recovered.  They will also get in touch at the three month mark, then annually for up to 10 years to check on your general health. Remember your health and safety is just as important as the patients.

 

Do my stem cells grow back?

Your stem cells are constantly regenerating, in fact they never stop. If your stem cells are collected directly from the bone marrow in your hip your stem cell levels will return to normal in just a few weeks and won’t cause your body any problems in the interim.

 

Can I donate more than once?

Some recipients may need a little more help from you – their first transplant may not engraft or they may unfortunately relapse. If this is the case, you may be asked to donate a second time to the same recipient.

If you are matched to another patient needing a transplant, then yes you may be asked to donate again.  Just know the chances of you being a match for one patient is very low, so the chances of you being a match for two is miniscule, but that being said it has happened – it is very rare to be that special!

Can I contact the person who receives my stem cells?

The Australian Bone Marrow Donor Registry (ABMDR) is happy to pass on anonymous cards or letters with no identifying details to a transplant recipient here in Australia.

If you have exchanged letters with your recipient and want to share your personal contact details, the ABMDR will ask you to sign a consent form authorising this release. As long as two years have passed since your donation and the recipient is also keen to get in contact, your details will be exchanged, and you can get in touch.

If your recipient lives overseas, however, contact may not be possible as some overseas registries do not allow contact between donors and recipients.