There are more than 300 stem cell transfusion from unmatched donors annually - and others that come from family members. Still small numbers but a lot of promise. Currently, stem cells can treat almost 50 conditions - most blood-related. But there is potential to treat heart disease and dementia in the future that make a good data bank essential.
And I'd also like to welcome Candace Weimer to our chat.
I should add that, at any given time, almost 1,000 Canadians are waiting for a livesaving transfusion of stem cells or bone marrow. So the demand is much greater than the available matches.
Candace is a cancer survivor who received a stem-cell transplant, and was featured in Andre's reporting.
Candace, could you tell us a little bit about your illness and how the stem-cell transplant helped you?
I am a lucky one, suriving a stem cell transplant.
I was given 2 years to live when I contracted a bone disease that simply stopped my marrow from producing blood.
The stem cell transplant literally saved and extended my life. I was given the transplant six years ago thanks to my brother.
Lucy, I have to honest, it is long and anything can happen! Immunosuppressed patients can contract infection very easily. It took approximately 3- 4 years for me to feel 'normal' again.
Candace was lucky. Only one in four people find a match within their family. Others need to depend on the generosity of strangers. That's why there is an unrelated stem cell and bone marrow registry.
Lucy, are you going through a stem cell transplant?
Transplant - whether it's stem cells or a solid organ - is a difficult procedure. They essentially destroy your immune system with chemotherapy to avoid rejection. But the risk is worth it because the alternative at the point you need a transplant is usually death.
For those who are considering donating stem cells to a registry, what is the procedure like?
It is relatively easy. It is like a two hour blood donation where blood is extracted out of one arm, spun and the stem cells (immature red blood cells) are extracted. The red and white blood cells are then replaced into the donor's arm.
Bone marrow donation is a bit more complicated where there is cores of bone marrow extracted from the donor's femur/hip area.
Very easy. The first step is to contact OneMatch to get a swab kit. They are online at www.blood.ca or phone 1-888-2-DONATE; there are also a number of swab clinics; your DNA goes into a registry and only if there is a match will you be called. Then you can undergo a process of blood donation or bone marrow extraction - as Candace explained. But registring is the important first step.
Younger people give the recipient a better chance.
In Canada, OneMatch will register anyone aged 17-50. But they are targetting two groups - young men 17-35 and, in particular, people from various ethnic backgrounds. Why young people? Because their donations are less likely to be rejected - for reasons that are not entirely clear.
As I understand, recipients can meet their donor one year following transplant. Not before.
Once the stem cells have engrafted - usually 100 days after transplant - recipients can begin the process of contacting the donor. Most donors are happy to put a face on their lifesaving donation. There are some really touching stories. Candace, of course, knows her donor well - her brother.
Canada has been doing stem cell matching for a long time, since 1988. But the process was quite passive. Since OneMatch was created in 2007 they have sought donors more aggressively. There are about 320,00 potential donors now registered in Canada, and they are linked to other registries with 18.6 million people total. It's a great example of international co-operation in healthcare.
Candace, I know you've heard from many cancer survivors and others who have received stem-cell transplants. What are the most common issues facing those who have received transplants?
The second part of your question pertained to stem cell related research. In that area, Canada is a laggard. There have been a lot of emotional debates about the source of stem cells, particularly if they come from aborted fetuses. Cord blood, however, is the richest source of stem cells and there is little controversy. New Moms can donate the umbilical cord - which otherwise would be discarded.
Fatigue, chemo-brain (struggle for common words) and finding their 'new normal' or life after transplant. After transplant I felt like I had to avoid many situations where germs etc. could harm me. As such, isolation would also be a common feeling.
Other physical issues such as weakened bone and teeth density and Graft Versus Host Disease (my old system battling my brother' s cells)
Multiple sclerosis is an example of other conditions being treated with stem cells. So far, the studies are tiny but results are promising. It's more-or-less the same process as with leukemia. There are also those who believe spinal cord injuries - even paralysis - can be reversed with stem cell transplants. The evidence there is a lot less clear. But, as I said earlier, we are really in the infancy of stem cell research.
We're getting towards the end of our time today, but before we sign off, I just wanted to ask Andre and Candace if they had any final thoughts.
Two parting thoughts: 1) Candace has written a great little book about her experiences. It's called When the World Dropped in On Me. 2) Register with OneMatch: it's easy, it's painless and you could save a life. www.blood.ca or 1-888-2-DONATE
Thank you for having me. I appreciate the opportunity to speak on behalf of leukemia and blood cancer patients. The Lymphoma and Leukemia Society of Canada has some great information for those dealing with blood cancers.
Lucy, good luck to your brother!
Fantastic, thanks to both of you for your time and your insights.
Candace, your story in Andre's article on this subject moved many readers. To close, I just wanted to share one comment on the story, posted by a reader named Ted - I think it's a fitting way to wrap up today!
"Was inspired by the story and just applied to join OneMatch. It took 5 minutes."
:) Thanks for saving our lives. XO, Candace
Hi all, thanks for joining us for our live discussion on this fascinating issue - in Wednesday's Globe and Mail, Andre Picard wrote about how social media is fuelling the matching of stem-cell donors with those desperately in need - click here for the full story.
There are more than 300 stem cell transfusion from unmatched donors annually - and others that come from family members. Still small numbers but a lot of promise. Currently, stem cells can treat almost 50 conditions - most blood-related. But there is potential to treat heart disease and dementia in the future that make a good data bank essential.
