Here you’ll find answers to frequently asked questions about stem cell donation.
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ABOUT BECOMING A DONOR
Who needs a blood stem cell transplant?
In many cases, a blood stem cell transplant is the only chance of a cure for patients with blood cancer, such as Leukaemia, Lymphoma and Myeloma and blood disorders such as Thalassemia and Aplastic Anaemia.
Who can be a donor?
Any adult between the ages of 18 and 50 and in general good health can become a donor. If you are already registered with any blood stem cell registry, it is not necessary to sign up again. If you suffer or have suffered from a chronic illness or any other severe illness or regularly take medication, please discuss your case with DKMS-BMST.
The most important exclusion criteria are:
- Cardiovascular diseases (e.g. heart attack, coronary heart disease)
- Pulmonary diseases (e.g. severe bronchial asthma)
- Severe kidney diseases
- Severe neurological diseases
- Diseases of the hematopoietic system
- Metabolic diseases (e.g. diabetes)
- Autoimmune diseases (e.g. rheumatism, multiple sclerosis)
- Severe infectious diseases (e.g. HIV, hepatitis C, chronic hepatitis B)
- Morbid obesity, i.e. a body mass index (BMI) of more than 40 (BMI = weight/height²)
- Identified as belonging to a risk group for severe infections transferred via blood
- Severe allergies
DKMS-BMST is legally obligated to comply with the international medical exclusion guidelines for blood stem cell donors.
How will the security of my data be ensured?
All personal data collected by DKMS-BMST is subject to special protection in accordance with the Information Technology Act 2000 (IT Act) and other applicable provisions for data protection, which we ensure by means of technical and organizational measures. Also, DKMS-BMST is obliged to follow the World Marrow Donors Association’s (www.wmda.info) data privacy standards.
Only unidentifiable donor data relevant for the donor search, such as donor identification number, gender, date of birth, tissue (HLA) typing results and the donor status (available or unavailable), will be transmitted in an encrypted form to blood stem cell donor registries and healthcare institutions in India and abroad. Names, addresses or similar identifying data will NOT be transmitted.
What happens after registration?
When a potential donor registers with us, the samples are sent to the DKMS Life Science Lab in Dresden, Germany for testing. At the lab, the sample is analysed to determine the HLA (Human Leukocyte Antigens) characteristics – a fairly complex procedure which can take up to six weeks. After the HLA has been typed, the data is stored confidentially and made available in an anonymous form via the DKMS registry and registries around the world, via the World Marrow Donor Association. Transplant physicians search these registries for matching donors for their patients. Only donor ID, Gender, date of birth and HLA characteristics are shared with the registries. Once you are on the registry, you will be informed and will receive a welcome email from us.
CAN I REGISTER FOR A SPECIFIC PERSON?
When you register with DKMS-BMST, you are added to the DKMS registry. Your data is stored confidentially and you could match with a patient anywhere in the world. Registering is a serious commitment that requires you to be willing to donate to any patient in need. If you only want to see if you can donate to a particular person, you must be tested privately through the patient’s transplant doctor.
I am already registered. Can I still register with DKMS-BMST too?
If you are already registered with any other registry in the country where you are living, you should not re-register. We, and each of these organisations, list the relevant information of our donor’s with the World Marrow Donor Association (WMDA), so re-registering would lead to duplication, confusion and a waste of resources.
I’M OVER 50 YEARS OF AGE, WHY CAN’T I REGISTER?
The safety of all of our donors is our main priority. The age limit is not intended to discriminate. Medical guidelines have been established to protect the safety of the donor and provide the best possible treatment to the patient. Additionally, research shows that cells from younger donors lead to a more successful outcome for the patients.
Does ethnicity affect finding a match?
Ethnic heritage is a very important factor. A patient is most likely to find a matching donor who has the same ethnicity, because people from the same ethnic group are more likely to have the same tissue traits. With more than 25,000 known HLA characteristics that can occur in millions of combinations, finding a match is extremely rare. Patients of more diverse ethnic backgrounds also tend to have more diverse HLA types, making it even more difficult to find a match.
WHY ARE THERE WEIGHT RESTRICTIONS FOR POTENTIAL DONORS?
There are medical guidelines for blood stem cell donations that have been established by the World Marrow Donor Association (WMDA) to protect the safety of the donor and provide the best possible outcome for the patient. The height and weight guidelines for donors allow for a Body Mass Index (BMI) of up to approximately 40.
IS DONATING BLOOD STEM CELLS THE SAME AS DONATING BLOOD?
When you register with DKMS-BMST, you are making yourself available as a potential blood stem cell donor for a patient in need of a transplant. You will only be asked to donate if you match with a patient. You will then be asked to donate blood stem cells in a procedure that is similar to donating blood platelets. You can remain a regular blood donor after registering as a stem cell donor, however if you do match with a patient, we ask that you don’t give blood for a month prior to donation and for a few months after.
WHAT ARE THE CHANCES I’LL GET CALLED TO DONATE?
You could be called as a potential match within weeks of registering, or perhaps it will take years. There is a chance that you may never be called, but there is also the chance that, if you do get called, you are the ONLY one who can save that patient’s life.
AM I THE ONLY MATCH?
It is possible for a patient to find multiple potential matches. However, that information is known only to the patient’s doctor and not to us. The doctor will select the best donor based on how close the HLA match is, as well as the donor's age, sex, size, health history, availability and other factors. If you are contacted as a potential match but not selected for donation, we will inform you. You will remain in the database to be available for other patients in need.
WHAT MAKES A GOOD MATCH?
HLA characteristics are the most important factor in finding a matching donor. In order for a stem cell transplant to have the highest chance of success, ideally 10 out of 10 relevant HLA characteristics should match between the patient and the donor. If a patient is lucky enough to have several matches, other factors will be analysed to find the best match. This is why we test more than 10 HLA characteristics.
As part of the initial typing, we also tissue type for further parameters that could prove advantageous, either now or in the future, such as the entire KIR receptor family, MICA/B, CCR5, HLA-DPB1, HLA-E, HLA-DQA1, HLA-DPA1, HLA-DRB3/4/5 and the ABO and Rh blood groups. In addition, our donors are also tested for cytomegalovirus (CMV), a common herpes virus.
Can a potential donor withdraw their commitment to donate?
On being identified as a match for a patient, you may withdraw from making a donation, at short notice, for personal or other reasons. Please note that we respect your decision, regardless. However, if you withdraw your commitment shortly before the actual transplantation, the doctors would have already initiated the patient’s preparation phase for the blood stem cell transplantation and at this point in time, the patient cannot survive without the transplantation of your blood stem cells.
CAN A REGISTERED POTENTIAL DONOR EXIT THE REGISTRY?
We urge you to consider the commitment you make to potentially save a life, before you sign up with DKMS-BMST. If, however, for health or other personal reasons, you wish to exit the DKMS-BMST, you will need to inform us in writing so that we can remove your details from the registry. Your decision will in no way affect the services you may receive from DKMS-BMST in the future.
Can a person donate stem cells multiple times?
Since blood stem cells regenerate again after collection (similar to a blood donation), it is possible to donate multiple times. If someone goes on to donate their blood stem cells to a patient, they will be reserved for that patient for a period of two years in case the patient requires a subsequent transplant.
Is an HIV test performed at the same time that a person is added to the DKMS-BMST database?
As part of your registration with DKMS-BMST, your tissue characteristic combinations will be examined. However, no tests for specific infections are carried out. Since specific requests for a blood stem cell donation may not be made until years later, we do not examine you for specific infections such as HIV, hepatitis B and C, until you are actually being considered as a donor.
WHY DO I NEED THE DKMS-BMST DONOR CARD?
When you register as a potential blood stem cell donor, you receive a DKMS-BMST donor card. This will contain your personal DKMS-BMST donor number. It makes our work easier if you keep the donor card close to hand and state your donor number when we contact you.
How does a stem cell donor search proceed?
The first step is to check whether any of the patient’s siblings would be a suitable donor. Approximately only 30% of patients find a matching donor within their family. If there are not any siblings who would be a match then a search for an unrelated donor is necessary by checking the worldwide database.
I MOVED. HOW DO I UPDATE MY PERSONAL DETAILS?
You can easily change or update your personal details on our website here or by sending an email to email@example.com or calling us on +91 80 6828 6500 / 6550 / 6551.
CAN I REGISTER if i have ASTHMA?
Whether or not you can register as a potential blood stem cell donor if you have asthma depends on how severe it is and how it is controlled. You can register if it is controlled with inhalers or non-steroidal oral medication. However, if your asthma requires oral steroids or steroid sparing agents, then you are not able to register. You are also unable to register if your asthma has meant you have been admitted to hospital with the need for IV steroids or emergency care in the past two years. Additionally, if you have ever been admitted to intensive care as a result of an asthma attack, then you are not able to register.
I HAVE EPILEPSY, CAN I REGISTER?
If you have Epilepsy, whether or not you can register as a potential blood stem cell donor depends on the frequency of your seizures.
It is possible to register as long as you have been seizure-free for the past 12 months without needing medication. However, if you are currently requiring medication or have recently had a seizure, then you are unable to register. You are also not able to register if seizures are related to a problem with, or injury to, the brain.
CAN I REGISTER IF I HAVE DIABETES?
This depends on which type of Diabetes a person has.
If someone has type 1 Diabetes, then unfortunately they are unable to register as a potential blood stem cell donor. This is because tablets or insulin injections are needed and the donation process could put the donor at risk.
If a person has type 2 Diabetes, then they can possibly register. To be able to do so, their Diabetes has to be controlled by diet and there should be no other risk factors such as obesity, high blood pressure and cardiovascular disease.
You are also unable to register if you have Diabetes Insipidus. This is because the process of donation poses a risk to the donor.
What if I am/become pregnant?
You can still register with us as a potential blood stem cell donor during your pregnancy as long as you fulfil the other requirements for donor suitability. Please let us know whether you are pregnant and what your due date is. From this time and generally six months after the birth (nursing and recovery time), you will not be able to donate your blood stem cells. After this period has ended, you will once again be able to be matched with a patient searching for an unrelated donor unless we hear otherwise from you.
HOW DOES A STEM CELL DONATION PROCEED?
HEALTH CHECK AND CONFIRMATORY TYPING (CT)
Before the collection, you will receive a detailed health questionnaire so that possible current exclusion criteria for a donation can be detected early. This is followed by a Confirmatory typing (CT), in which your tissue characteristics are analyzed again using a blood sample. In addition to this, your blood is tested for specific infections, such as HIV or hepatitis viruses. Using these results, a decision is made as to whether you are the most suitable donor for the patient.
Once you are confirmed as a match, you will undergo a thorough examination by a physician at the clinic where you will donate, to ensure that you are in good general health. This comprehensive examination ensures that the blood stem cell collection will take place with the least amount of risk as possible, for you and for the patient.
Before the blood stem cell collection, you do not need to comply with any particular restrictions, however, you should avoid any and all risks that could lead to illnesses or serious injuries which would subsequently put the blood stem cell donation at risk.
How does the donation process work?
If you go on to donate your blood stem cells this will be done via the Peripheral Blood Stem Cell (PBSC) collection method. This procedure does not require anaesthetic or admission to hospital. During the collection, a sterile needle will be placed into a vein in each of your arms. Blood is drawn through one vein and passed through a machine that collects the stem cells, before the rest of the blood is returned back into the body through the other arm. It Is similar to a donation of platelets and the donation is normally completed within 4-6 hours. For the five consecutive days leading up to the donation, the growth factor G-CSF, which is naturally present in the body, is injected subcutaneously to the donor. This is required in order to increase the number of stem cells in the blood.
Will I permanently lose my blood stem cells after the donation?
After a blood stem cell donation, the body quickly regenerates the level of blood stem cells to what they were before the donation.. The process is comparable to a blood donation and does not lead to a permanent loss of blood stem cells. The donor’s own immune system will not be weakened.
Are there any side effects for the donor?
The PBSC method has been used for DKMS donors around the world since 1996. Extensive research has been undertaken, including by DKMS scientists and there is no evidence of any long-term side effects. The donor may experience some temporary discomfort, (for example headache, body ache, fatigue, nausea) while they are receiving G-CSF. These symptoms disappear within a day or two following the donation and donors can take non-aspirin products (such as Paracetamol or Ibuprofen) for relief from the discomfort. After the donation has taken place we will remain in regular contact with you to ensure that you have fully recovered.
MUST THE DONOR HAVE THE SAME BLOOD TYPE AS THE PATIENT?
For stem cell transplantation, the matching of blood types or groups is not at all important. The critical decision of selecting a donor is based on the most precise match possible of tissue characteristics (HLA characteristics) between the donor and patient. Finding an almost 100% match is very complicated and is therefore often compared to the proverbial search for a needle in a haystack. If a transplant takes place, the recipient (patient) also takes on the blood group of the donor, together with the blood stem cells.
CAN MY BLOOD STEM CELLS TRANSMIT DISEASES THAT THE PATIENT DID NOT HAVE BEFORE?
If you are a match for a patient you will receive numerous medical assessments before the donation and will be screened thoroughly to ensure you are a completely suitable and safe donor for the patient and that no communicable diseases will be transmitted to the patient.
WHAT COMPLICATIONS CAN ARISE FOR A PATIENT WHO HAS RECEIVED A BLOOD STEM CELL DONATION?
Complications during the preparatory phases generally occur in the form of the known side-effects of chemotherapy and radiation therapy, such as nausea and regurgitation. During the initial period after the donation, a higher risk of infection generally exists since the patient’s immune system is weakened after the preparatory phases and can only recover gradually. Unfortunately, setbacks can also occur because, in some circumstances, not all cancer cells are destroyed. That means that a renewed outbreak of the disease can occur again, even after the donation. The new blood stem cells can also prove to be incompatible with the patient’s own body tissues and this subsequently leads to a reverse rejection reaction. This complication (Graft-versus-host Disease) can occur in various levels of severity. However, it can often be treated successfully. If the donor’s blood stem cells do not grow or it leads to a relapse of the disease, the donor might be asked whether they are willing to provide another stem cell donation.
HOW HIGH ARE THE CHANCES OF A CURE DUE TO A STEM CELL DONATION?
The survival rate after a donation depends on many different factors including the age and health condition of the patient, the timing of the donation, the type of underlying disease and the emergence of potential complications.
Why isn’t a blood stem cell collection possible in all major clinics?
Collecting blood stem cells and transporting these, often to other countries, is a highly skilled procedure and unfortunately not all clinics have the technological capabilities and expertise needed to do this.
Once I am identified as a match, how long do I have to make a decision?
When you register as a blood stem cell donor, you make a serious commitment. You always have the right to change your mind. However, a late decision to NOT donate can be life-threatening to the patient and time is often a very critical factor for the patient. So, we ask that you consider your decision seriously upon learning you are a potential match. Talk to family, talk to friends or talk to your DKMS-BMST coordinator, who can answer all your questions and even connect you with a past donor to give you first-hand insights into donation.
A FRIEND/RELATIVE NEEDS A STEM CELL TRANSPLANT. HOW CAN I HELP?
Learning that a loved one may need a stem cell transplant can be an overwhelming experience. Close friends and relatives of the patient may want to help, but don’t always know what they can do. DKMS-BMST provides a positive way to get involved, including organizing blood stem cell donor registration drives to recruit donors, rallying community support and connecting families that may be spread across the country. We’ll support your efforts with social media campaigns and support for your registration drive to create a movement behind your cause. To learn more about the support we can provide you with, please contact us at firstname.lastname@example.org or call us at +91 80 6828 6500 / 6550 / 6551.
HOW ARE MEDICAL COSTS COVERED?
There will be no cost to you. When a donor is matched with a patient, we will cover the costs (including any travel, meals, lodging expenses or potential loss of salary. DKMS-BMST will also cover the costs for a companion to travel with you to the hospital. It is not necessary to use a donor’s own health insurance. Whilst it is extremely rare to require follow-up care, if it is ever needed, the donor’s costs will also be covered by DKMS-BMST. Other than that, we are not legally allowed to make any payments or rewards for the provision of blood stem cells for transplantation.
Will I be granted sick leave for my donation and how will my employer react?
In the case of a blood stem cell donation, your employer will be contacted by DKMS-BMST. You will receive a letter to present to your employer in which we ask for you to be released from your duties for the period of the preliminary examination and the collection. Our experience has shown that employers react very positively when an employee is asked to donate blood stem cells. However, if necessary DKMS-BMST will cover the cost of any loss of salary that is due to the donation process.
HOW IS MY PATIENT DOING? CAN I MEET HIM OR HER?
We receive information about the patient’s state of health from the transplantation clinic no earlier than three months after the blood stem cell transplantation. If the donor would like feedback, they will generally receive a message from DKMS-BMST. If the donor has additional questions, the medical department is available at the following number and would be happy to help: +91 (0) 80 6828 6570 / 6571.
CONTACT WITH PATIENTS
International guidelines stipulate that donors and patients may only meet each other in person two years after the donation, which is additionally dependent on the regulations in the patient’s country of residence, which sometimes do not allow any contact. In the meantime, if allowed by the regulations in the patient’s country, donors can contact patients anonymously, sending letters or gifts via DKMS-BMST. Due to privacy reasons, DKMS-BMST has no direct contact with patients and often has only a minimal influence on the forwarding of mail to patients. Here, we depend on the support of the hospital treating the patient. Since patients often receive further treatment from another clinic or hospital after the transplantation, delays may occur. After the end of the two-year period, donors and patients may write to each other directly or meet each other in person – again mediated by DKMS-BMST provided both parties agree. Experience over the years has shown that many donors and patients want to get to know each other. Time and time again, meetings between donors and patients are very moving moments. It is not uncommon for lasting friendships to develop.
WORKING/VOLUNTEERING FOR DKMS-BMST
HOW CAN I VOLUNTEER AT DKMS-BMST
If you are interested in volunteering at our office in Bangalore, and can spare one or two days a week, we’d love to hear from you!
Just email us at email@example.com for more information.