ANN ARBOR, MI They searched the world for a match.
Bennett Sevack needed a bone marrow transplant. He was diagnosed with myelodysplastic syndrome after treatment for chronic lymphocytic leukemia. But there was no match for the Ann Arbor resident in the international registry.
So, his family started making calls.
Doctors first tried his siblings and cousins. When that didnt work, his sisters, friends and family spent six weeks calling and sharing flyers with synagogues around the world to encourage people to join the bone marrow registry, hoping someone with Sevacks Sephardic and Ashkenazi Jewish background would be willing to donate.
By fall, a partial match was found in an Italian obstetrics hospital in an umbilical cord blood sample. Soon after, another cord blood match was found in the U.S. It was enough to perform a transplant.
Sevack has gained an intense appreciation for donors.
You can save somebodys life..." he said. Its a blessing to do.
Finding an acceptable bone marrow donor is a challenge in general, but its that much harder for people of color and patients of complex ethnic backgrounds like Sevack, according to health care providers and families whove embarked on far-reaching searches for a match.
A white person has a 77% shot at finding a matching donor, according to Be The Match, a widely used donor registry. A black persons chances are 23%. For people of mixed backgrounds, the search can become more complex.
Part of the issue is the relatively narrow population of donors in the registry. Another part is the science: Certain HLA types, the protein that needs to match in bone marrow transplants, are more unique to specific backgrounds.
A closer look at plans for the new $920M University of Michigan hospital
Sevacks transplant was completed in October 2019 more than three years after his initial diagnosis, and four months after getting news that he would definitely need a transplant.
He spent eight weeks healing from his transplant and two weeks healing from a bout of graft-versus-host disease in the hematology oncology clinic on the seventh floor of Ann Arbors C.S. Mott Childrens Hospital.
On the same floor, a 9-year-old Ann Arbor-area patient undergoing chemotherapy for acute myeloid leukemia is in the same predicament that Sevack once faced. She may need a bone marrow transplant as well, but a donor match her ethnic background is Cantonese, Hispanic and Caucasian has yet to be found in the registry.
The search
Genetics play a major role in finding a good match, said Mark Vander Lugt, a pediatric bone marrow transplant specialist at C.S. Mott working with the 9-year-old. People get four HLA types from each parent, meaning donors need to match in at least six spots, though sometimes a stronger match is required.
You get combinations that are hard to find in the registry because of that, Vander Lugt said.
Not everyone needs a transplant once theyre diagnosed. Doctors often treat blood cancers and related illnesses with chemotherapy first killing off the bad cells and waiting to see if healthy cells regenerate. If they dont, a transplant replaces the bone marrow, where blood stem cells are made.
Mothers breast cancer pushes Ypsilanti woman to get preventative mastectomy
The registry is so low on certain populations that some began taking matters into their own hands. Athena Asklipiadis founded Mixed Marrow, a nonprofit that conducts outreach to encourage multi-ethnic bone marrow and blood cell donations. She said the misconceptions of donation is one of the largest challenges in getting people registered. She started by reaching out to Facebook groups and college clubs on the West Coast, where she is based. Eventually, families began reaching out to her to help in the donor search.
People use this phrase, When theres a cure for cancer or If theres a cure for cancer, Asklipiadis said. But these are actual blood diseases and cancers that are curable. Theyre curable by the selflessness of a donor and thats the beautiful thing about it.
Sevacks sister Laurel Bernstein was part of the group of relatives and supporters who called synagogues in search of donors. She estimated they called hundreds of people and added more than 1,000 to the donor registry while searching for Sevacks match.
The nine of us all felt so energized by what happened, Bernstein said. "We had not finished calling the list, even though we got the match. We went through to the end of the list to help pay it forward, to help other people, to get that much more DNA into the database.
The transplant
For Sevack, it was umbilical cord blood that saved his life. DNA from the two samples created enough HLA type matches to begin the transplant.
Vander Lugt said the preferred transplant method is still donor transplants, because cord blood units are smaller and in more limited supply than donor cells.
Misconceptions of transplants are another roadblock. A bone marrow harvest in which a donor undergoes surgery to collect marrow from the hip is widely believed to be painful. But experts describe the process as a mild discomfort with a two-to-three day recovery time, instead.
And direct harvest is no longer the only method. Many hospitals also practice apheresis, which collects the peripheral blood that can generate new bone marrow through a process that looks like dialysis. Theres no surgery involved.
Choosing between the two collection processes is based on multiple factors, including the health of the patient undergoing general anesthesia and doctor and donor preference, Vander Lugt said.
The value
Fear of the unknown is what affected Sevack the most going into treatment. He said he had an anxiety breakdown the morning of his transplant, when he realized what was about to happen.
My heart was to the moon, Sevack said. I was fully dressed and every part of me was drenched. In about eight minutes I had gone through this journey of fear because the reality of what was going to come was upon me. (My wife) calmed me down, I changed my clothes and this journey began. Theres been plenty of times when Ive been scared to death.
Finding a transplant match taught his wife Phyllis Sevack the importance of facing each day separately. Fighting cancer was about healing every day making big battles smaller.
The reality of it hits all at once, Phyllis Sevack said. "I wouldnt want anybody to be afraid to go through it because it is every day take it day by day. And as soon as Bennett got over that hes not doing everything on one day, (he got better mentally).
Now at home, Bennett Sevack may take a year to fully heal. He looks forward to small improvements in his quality of life, like an expanded diet and doing his own grocery shopping at Meijer, he said.
Even the routine blood and platelet donations he received in treatment were invaluable to him. They saved his life.
Where to donate blood in Washtenaw County during shortage
Every day, theyd give me sacks of stuff that made me sick to think about it, Sevack said. It was someones donation that was given, that was literally giving me life. People who donate would do an amazing service to someone. You may not know who that is but its somebody.
Potential donors can begin the registration process by filling out a questionnaire about their medical history at bethematch.org. A cheek swab will confirm whether you meet the medical guidelines for donation. You may remain on the registry for years before a match is found. More information is available here.
Wolverines for Life and the Michigan Medicine Bone Marrow Transplant department are hosting a registration drive from 10:30 a.m. to 5 p.m. Tuesday, Feb. 18 at the Pierpoint Commons lobby, 2101 Bonisteel Blvd., Ann Arbor.
See the original post here:
Mixed ethnic backgrounds make it that much harder to find a bone marrow transplant - MLive.com
- Day +22 [Last Updated On: August 4th, 2011] [Originally Added On: August 4th, 2011]
- Milk Teeth Stem Cell Banking [Last Updated On: August 4th, 2011] [Originally Added On: August 4th, 2011]
- Multiple Sclerosis Adult Stem Cell Therapy [Last Updated On: August 4th, 2011] [Originally Added On: August 4th, 2011]
- Stem Cell Therapy for Autism: A Proposal [Last Updated On: August 5th, 2011] [Originally Added On: August 5th, 2011]
- Dr Omar Gonzalez [Last Updated On: August 7th, 2011] [Originally Added On: August 7th, 2011]
- American Stem Cell Clinic Corporate Video [Last Updated On: August 7th, 2011] [Originally Added On: August 7th, 2011]
- Multiple Sclerosis Stem Cell Therapy News Coverage [Last Updated On: August 9th, 2011] [Originally Added On: August 9th, 2011]
- Dr Brothers, OD Part 2 Following Stem Cell Patients [Last Updated On: August 13th, 2011] [Originally Added On: August 13th, 2011]
- Dr Brothers, OD Part 1 Following Stem Cell Patients [Last Updated On: August 15th, 2011] [Originally Added On: August 15th, 2011]
- Panama City Beach FL: First In-Clinic Adipose Stem Cell Procedure [Last Updated On: August 16th, 2011] [Originally Added On: August 16th, 2011]
- Stem Cell Therapy for Type II Diabetes [Last Updated On: August 17th, 2011] [Originally Added On: August 17th, 2011]
- Dr. Andre Terzic - Smart Stem Cells [Last Updated On: September 5th, 2011] [Originally Added On: September 5th, 2011]
- Autologous Blood and Marrow Transplant at Mayo Clinic 3 [Last Updated On: September 6th, 2011] [Originally Added On: September 6th, 2011]
- Human Embryonic Stem Cell Therapy: Pathway to the Clinic [Last Updated On: September 8th, 2011] [Originally Added On: September 8th, 2011]
- Mayo Clinic Study Shows Induced Pluripotent Stem Cells Repair Heart [Last Updated On: September 9th, 2011] [Originally Added On: September 9th, 2011]
- Kansas' First In-Clinic Adipose Stem Cell Procedure [Last Updated On: September 11th, 2011] [Originally Added On: September 11th, 2011]
- Breast Augmentation with Autologous Stem Cells at Clinic DDr. Heinrich® [Last Updated On: September 11th, 2011] [Originally Added On: September 11th, 2011]
- Anna Deeter Testimonial for Fetal Stem Cell Treatment at EmCell Clinic [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- MediVet Canada performs the first In-Clinic Stem Cell Procedure [Last Updated On: September 20th, 2011] [Originally Added On: September 20th, 2011]
- Embryonic Stem Cells From Skin: Making Old Cells Young [Last Updated On: September 22nd, 2011] [Originally Added On: September 22nd, 2011]
- The Politics of Stem Cell Research [Last Updated On: September 25th, 2011] [Originally Added On: September 25th, 2011]
- STEM CELL FOR KIDNEY FAILURE - MUMBAI.wmv [Last Updated On: September 26th, 2011] [Originally Added On: September 26th, 2011]
- Adult Stem Cells and Cancer [Last Updated On: September 28th, 2011] [Originally Added On: September 28th, 2011]
- ACT - Stem Cell Trial for AMD and Stargardt - Phase 1 [Last Updated On: September 29th, 2011] [Originally Added On: September 29th, 2011]
- Stem Cell Health Alliance - Breakthrough to Independence [Last Updated On: September 30th, 2011] [Originally Added On: September 30th, 2011]
- Professor waarschuwt tegen commerciële stamcelklinieken [Last Updated On: October 3rd, 2011] [Originally Added On: October 3rd, 2011]
- Austin clinic to bank adult stem cells [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- Dr. Gonzalez and his Integrative Medicine clinic in Mexico [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- Cell Therapy Clinic EmCell [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- STEM CELL THERAPY FOR PARALYSIS, MUMBAI.wmv [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- Clinic Embryos and Stem Cell Research [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- Affordable Stem Cell Therapy in Guatemala (2hrs from Miami) [Last Updated On: October 4th, 2011] [Originally Added On: October 4th, 2011]
- "Molly" - Before and After Stem Cell Therapy [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Mayo Clinic Regenerative Medicine Consult Service [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Houston veterinarian uses cutting-edge stem cell technology on dogs [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Ruby, Olsen Veterinary Clinic: Day 1 Stem Cell Procedure [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- A Dose of Reality on Alternative Stem Cell Treatments: What you don't know can hurt you [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- The Next Frontier in Stem Cell Research [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- stem cell trial for leading causes of blindness [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Better in Beijing. video 3 [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Ruby, Olsen Veterinary Clinic 30 Days after Stem Cell Treatment [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- Mesenchymal Stem Cells Drive New MS Study/Treatment [Last Updated On: October 6th, 2011] [Originally Added On: October 6th, 2011]
- New stem cell procedure in BC for Ellie at the Kamloops Veterinary Clinic-April 26 [Last Updated On: October 7th, 2011] [Originally Added On: October 7th, 2011]
- Stem Cell Face Lift [Last Updated On: October 7th, 2011] [Originally Added On: October 7th, 2011]
- Bringing Stem Cell Cures to the Clinic: UC Davis GMP Facility [Last Updated On: October 7th, 2011] [Originally Added On: October 7th, 2011]
- Michigan Law on Stem Cells [Last Updated On: October 8th, 2011] [Originally Added On: October 8th, 2011]
- Stem Cell Therapy for Multiple Sclerosis (MS patient) - Video [Last Updated On: October 14th, 2011] [Originally Added On: October 14th, 2011]
- Fat Stem Cell Therapy Publication - Video [Last Updated On: October 14th, 2011] [Originally Added On: October 14th, 2011]
- Public Symposium: The Stem Cell Promise: Moving to the Clinic - Video [Last Updated On: October 14th, 2011] [Originally Added On: October 14th, 2011]
- Becoming a Blood Stem Cell Donor - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- Stem cell vet treatment performed in Ontario - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- STEM CELLS TRANSPLANTATION - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- Home Town Company has brought Stem Cell - Video [Last Updated On: October 21st, 2011] [Originally Added On: October 21st, 2011]
- Bone Marrow Stem Cells - Video [Last Updated On: October 22nd, 2011] [Originally Added On: October 22nd, 2011]
- Endogenous Stem Cell Therapy for Diabetes - Video [Last Updated On: October 25th, 2011] [Originally Added On: October 25th, 2011]
- Immune Control of Stem Cell Mobilization - Video [Last Updated On: October 25th, 2011] [Originally Added On: October 25th, 2011]
- Utah's First In-Clinic Stem Cell Procedure - Video [Last Updated On: November 12th, 2011] [Originally Added On: November 12th, 2011]
- Medical tourism in Croatia - Smart Stem Cells by Dr. Andre Terzic, Mayo Clinic - Video [Last Updated On: November 12th, 2011] [Originally Added On: November 12th, 2011]
- reconstrutive nose surgery(nose job to revise),stem cell - Video [Last Updated On: November 12th, 2011] [Originally Added On: November 12th, 2011]
- Baby Elsa Blood and Bone Marrow Match Clinic - Video [Last Updated On: November 12th, 2011] [Originally Added On: November 12th, 2011]
- Panama City Beach, FL: First In-Clinic Adipose Stem Cell Procedure - Video [Last Updated On: November 13th, 2011] [Originally Added On: November 13th, 2011]
- India Trip - Video [Last Updated On: November 13th, 2011] [Originally Added On: November 13th, 2011]
- Man Cured of Arthritis Using Stem Cells at Clinic in Panama - Video [Last Updated On: November 30th, 2011] [Originally Added On: November 30th, 2011]
- Fat Stem Cell Therapy for Multiple Sclerosis - Video [Last Updated On: December 2nd, 2011] [Originally Added On: December 2nd, 2011]
- Amanda and Britney BCC Table Clinic 2011 - Video [Last Updated On: December 13th, 2011] [Originally Added On: December 13th, 2011]
- Using Your Own Fat Stem Cells For Arthritis, Sports Injuries and Autoimmune Disorders - Video [Last Updated On: December 13th, 2011] [Originally Added On: December 13th, 2011]
- Adult Stem Cell therapy for COPD -Real patient results, USA Stem Cells- Donald W. Testimonial - Video [Last Updated On: January 5th, 2012] [Originally Added On: January 5th, 2012]
- Lgr5 Stem Cells and Cancer - Video [Last Updated On: January 5th, 2012] [Originally Added On: January 5th, 2012]
- Dogs Recieve Stem Cell Treatment - Video [Last Updated On: January 5th, 2012] [Originally Added On: January 5th, 2012]
- Dr. Steenblock's Office- STEM CELL Clinic - Video [Last Updated On: January 21st, 2012] [Originally Added On: January 21st, 2012]
- Reuben Before and after Stem Cell Therapy - Video [Last Updated On: January 23rd, 2012] [Originally Added On: January 23rd, 2012]
- My India Trip#1 Photos - Video [Last Updated On: January 23rd, 2012] [Originally Added On: January 23rd, 2012]
- Stem Cell Financing - Video [Last Updated On: January 25th, 2012] [Originally Added On: January 25th, 2012]
- Stem Cell's in Sarasota by Regenerative clinic for Meniscus Damage. - Video [Last Updated On: January 30th, 2012] [Originally Added On: January 30th, 2012]
- StemCells, Inc. Announces Publication of Preclinical Data Demonstrating Its Human Neural Stem Cells Preserve Vision [Last Updated On: January 30th, 2012] [Originally Added On: January 30th, 2012]
- Stoney Creek firm licenses stem cell technology [Last Updated On: February 3rd, 2012] [Originally Added On: February 3rd, 2012]
- Bonita stem cell doctor's attorney quits, state hearing still scheduled [Last Updated On: February 5th, 2012] [Originally Added On: February 5th, 2012]
- From the Avro disappointment to the gift of stem-cell research [Last Updated On: February 6th, 2012] [Originally Added On: February 6th, 2012]
- $30 million donation from Boris family will help McMaster turn stem cell research into therapy [Last Updated On: February 6th, 2012] [Originally Added On: February 6th, 2012]
- Researchers make breakthrough in stem cell research [Last Updated On: February 13th, 2012] [Originally Added On: February 13th, 2012]