I want to register as a Bone Marrow donor, however I have a few queries?
WHAT IS BONE MARROW AND HOW IS IT EXTRACTED?
Bone Marrow is a blood-like substance enclosed in the hollow of bones. It can be extracted from the pelvic bones by needle under a general anaesthetic, or from the blood stream during a Peripheral Blood Stem Cell Donation (PBSC)
WHAT IS THE FUNCTION OF THE BONE MARROW?
Bone Marrow produces the red, white and platelet blood cells
HOW MUCH IS EXTRACTED, WHERE FROM AND IS IT PAINFUL?
A small amount of Marrow fluid cells, approx.150-200ml is extracted from either the Pelvic region or the Blood Stream and it is just a slight discomfort for a few days
DOES IT MAKE ME PHYSICALLY ILL OR WEAKER?
No it does not, the Bone Marrow fluid cells regenerate within the body after a few days. You will feel slightly stiff in the lower back and lethargic for a short while the Marrow levels regenerate after donating via the general anaesthetic route. If you have donated via the Peripheral Blood Stem Cell (PBSC) route then you will have post treatment slight flu like symptoms and discomfort but normality returns in 1 to 2 days.
DO MARROW TRANSPLANTS REALLY SAVE LIVES?
Yes, if a matching donor is found
WHAT IS LEUKAEMIA?
It is a Cancer of the White Blood cells
WHO NEEDS A BONE MARROW TRANSPLANT?
Sufferers of Bone Marrow Disorders like Leukaemia, Aplastic Anaemia, Multiple Myeloma, Lymphoma, Sickle Cell Sufferers etc
WHY ARE SO MANY DONORS NEEDED?
When a person's bone marrow is defective it fails to produce some or all of the blood cells necessary to maintain health. Consequently they suffer from bone marrow disorders such as Leukaemia, Aplastic Anaemia etc. In some patients at least, life can be saved by transplanting bone marrow from a healthy volunteer donor. The likelihood is that finding a matching donor is considerably greater in donors from the same ethnic/racial background. Lack of potential donors means less chances of life for sufferers. This is why the ACLT has utilised the last 14 years raising awareness within the community for people to come forward as potential life savers.
HOW CAN I HELP? CAN I REALLY MAKE A DIFFERENCE?
Yes, if you are in general good health, aged between 18-49, weigh above 7stone 12Ibs and be prepared to stay committed to becoming a potential life saver, (by staying on the bone marrow register) up to your 60th birthday. Initially, all we need is a small saliva sample or blood sample to register your "tissue type" details (white blood cells which are the Bone Marrow Stem Cells) onto one of the two confidential databases. This can be done at one of the many registration drives that the ACLT undertakes throughout the UK. It can also be undertaken via the postal route.
All of the registers around the world will contact your bone marrow register to determine if your "tissue type" details are a suitable match for a sufferer in their country. If you match with a patient you will be selected for further blood testing - this testing is ESSENTIAL to determine whether you would be suitable to actually donate Bone Marrow fluid (cells).
IF I ATTEND A DRIVE AND I'M NOT 100% SURE - WHAT SHOULD I DO?
DO NOT GIVE A SALIVA OR BLOOD SAMPLE. You should bookmark this FAQ's sheet, think it over seriously and discuss it with family, partner, or friends. Please feel free also to ring or e-mail us to discuss this in detail, as we are always happy to help.
Once you have made your decision, just post the Medical Application form and the registry will then send you a sample kit to take to your GP\local hospital. It is much better to take this route than join at a drive and then not feel able to proceed should you match.
DO NOT JOIN IF YOU ARE UNSURE OR UNABLE TO COMMIT YOURSELF, YOU CAN ALWAYS HELP US IN OTHER WAYS BY:
RAISING AWARENESS OF THE ACLT AND/OR FUNDS IN YOUR LOCAL AREA
WHAT IF I CHANGE MY NAME OR ADDRESS?
If you have changed your name and/or your address since you joined the register it is vital you inform the bone marrow registry.
A staggering 10,000 potential donors disappear from the register every year. Many of those have to be deleted for medical or age reasons, but others simply because they forget to communicate their new details.
Apart from the expense of having to trace "lost" volunteers, there is the added element of time - time that some patients might not have.
If you are living in the UK and have changed your name and/or your address and haven't informed your bone marrow registry, if you joined the register via an ACLT clinic, or if you are not sure all you have to do is ring Anthony Nolan on 020 7284 1234 or the National Blood Service/British Bone Marrow Registry on telephone no. 0300 123 23 23 and give them your updated information. The same advice applies if you have registered as a potential donors for any of the bone marrow registers around the world
Please remember to tell them your previous name and address as well as the new one. And always include your post code and a daytime telephone number if you can.
WHAT HAPPENS IF I MATCH & HOW WILL I BE LOOKED AFTER?
If you match a patient, as previously discussed, you will firstly be required to give a further blood sample. If you are chosen to donate, a full medical is arranged for at least three (3) weeks prior to donation. This medical ensures that you are fit enough to undergo the general anaesthetic and the procedure of bone marrow donation itself, if that is designated form of donation in preference to the Peripheral Blood Stem Cell (PBSC) option.
The donation procedure involves a two night stay in a London hospital and the donor should expect to feel some localised discomfort and bruising after the procedure, for a few days. Tiredness and general lethargy are also expected for up to 10 days whilst the marrow rebuilds in the body.
A Welfare Officer will also visit you in hospital and maintain contact for a short time after the donation. All donors should be aware that from 3 days to up to a week off work is strongly advised, whilst your body naturally regenerates the Bone Marrow level back to its normal level. All travel expenses and loss of earnings are discussed and covered.
PERIPHERAL BLOOD STEM CELL (PBSC) DONATION
The alternative way of donating is via the Peripheral Blood Stem Cell (PBSC) donation. Stem Cell transplants use just the stem cells which are extracted from the blood. Stem cells are blood cells at the earliest stage of development in the bone marrow. They develop into the 3 different blood cells, red, white and platelets. They can be taken from the bone marrow or collected from the bloodstream.
Unlike Bone Marrow, Stem Cells can be removed without using a general anaesthetic. Your blood cells tend to recover more quickly with a Stem Cell transplant than with a Bone Marrow transplant, so you are at risk of infection for a shorter time.
To collect the Stem cells from the blood, you will be given injections of a growth factor - a protein that stimulates the bone marrow to produce lots of immature, normal cells. These spill over into the blood and can be collected.
Collecting Stem Cells takes 3-4 hours. You will be sitting down on a hospital bed reading relaxing, with a drip placed into a vein in each arm. Blood is taken through the drip to a machine called a cell separator, where it is spun to separate out the Stem Cells. Your blood is then returned to you through the vein in your other arm.
Presently the choice of which option of donating is left to the Medical teams. But you must be receptive to either options unless you are medically deemed to be receptive to only one particular option of donation. Both are simple but potentially life saving procedures
HOW OFTEN WOULD I BE ASKED TO DONATE?
It is highly unlikely that you would be asked to donate more than once in your life time. On occasion donors have donated twice, usually in the case of the patient relapsing. Once a donor has donated bone marrow it is entirely their choice if they wish to remain on the register and most of the donors do.
IF I AM LUCKY ENOUGH TO BE POTENTIALLY LIFE SAVING DONOR, WILL I STILL NEED TO STAY ON THE REGISTER AFTERWARDS?
Once a donor has donated Bone Marrow fluid, it is entirely their choice if they wish to remain on the register and most of the donors do.
WHEN & WHY WOULD I BE ASKED TO GIVE FURTHER BLOOD SAMPLES OR DONATE?
You will ONLY be contacted to give a blood sample if YOU MATCH WITH A PATIENT. These blood samples enable the registries to determine whether you are compatible enough to donate bone marrow and without them it is IMPOSSIBLE to find out whether you are suitable.
Once you give your first saliva or blood sample at a drive it is difficult to say WHEN you will match. You must be aware that you could match within weeks, a few months or it may be many years before your tissue type matches a patient. You should ONLY join if you are prepared to give the additional samples and donate marrow.
WHAT IF I CHANGE MY MIND?
Of course we can never force a donor to donate but we would ask you to SERIOUSLY consider the full implications of being a donor BEFORE you register. It is devastating for the patients and all concerned when a donor is identified and then "drops out".
(Parts of this section are reprinted courtesy of the Anthony Nolan and CancerBACUP)
MYTHS, FEARS AND TABOOS
I HAVE SICKLE CELL/THALASSAEMIA TRAIT THEREFORE I CAN’T HELP ?
Yes you can, unless you have Sickle Cell Anaemia or Thalassaemia Disease you can become a potential donor.
I DRINK ALCOHOL OR SMOKE MARIJUANA SO OBVIOUSLY I CAN’T HELP?
What you drink or smoke has no relevance to being a donor. It is not the blood group or quality of the blood that is tested. What is tested is the unique bone marrow cells in the blood that determines that you are of African descent or Mixed Parentage descent.
THEY ARE GOING TO USE MY BLOOD FOR EXPERIMENTS?
The saliva or blood sample is only used to determine whether your marrow cells are of a match for any sufferer, most probably, from your own ethnic background therefore hopefully allowing the potential of a life being saved. Please do take time before you join as it is in the interest of ALL concerned.
WHAT IF I LIVE OUTSIDE THE UK?
Can you register as a potential bone marrow donor in your country?
The ACLT can only register eligible UK residents as donors. However, you may be able to register if your country has a bone marrow registry, and depending on your location and their local rules and health criteria to join up. To find out, enter the keywords below into your internet browser or search engine:
‘bone marrow registry' + name of your country
Alternatively, you can also search the list of internationally accredited participating registers by visiting:
Bone Marrow Donors Worldwide: www.bmdw.org
Click here to view the international list of participating registries
Can you be a blood donor?
To find out about ways to give blood in your country, enter the keywords below into your internet browser or search engine:
‘blood donation' + name of your country