Needing a Blood Stem Cell Transplant for Myelofibrosis
- Guitarist and singer-songwriter Kina Grannis’ mom Trish is battling a rare blood cancer and is in desperate need of a life-saving blood stem cell transplant, which is only possible if she finds a perfect donor match.
- Myelofibrosis, the type of cancer Kina Grannis’ mom is battling, is a rare type of bone marrow cancer that can cause scarring in the bone marrow and anemia, in which the body does not have enough healthy blood cells.
- Myelofibrosis is part of a group of diseases known as myeloproliferative neoplasms.
- “The likelihood of Asians and other people of color finding a match is significantly lower due to a lack of representation in the registry. Let’s change that,” Gannis writes on her mom’s virtual donor drive page, A Match for Mama G.
- Her mom is in need of an allogeneic stem cell transplantation, which “involves the use of stem cells from someone other than the patient,” and the donor can be related or unrelated, the Leukemia and Lymphoma Society explains.
Grannis first opened up earlier this year about her mom’s battle with myelofibrosis, which has no curable drug therapy but can potentially be cured through allogeneic stem cell transplantation.Read More
“Calling all AAPI/Asian folks! We are in dire need of more people of Asian descent in the global bone marrow registry—you could save a life,” Grannis captioned a recent Instagram post featuring a photo of her mom.
Grannis, winner of the 2008 Doritos Crash the Super Bowl contest, then wrote about how people can help spread awareness. First, she suggested that anyone with “connections to any Asian communities or organizations (churches, clubs, companies, etc)” set up local events for people to get their cheeks swabbed.
A cheek swab is one of the first steps people take to join the donor registry. The swab is tested and your genetic type is then added to the registry, according to Be The Match, a leading organization in connecting patients with matching bone marrow or stem cell donors.
Second, the mom of one requests anyone seeing her post to share it with everyone they know, urging, “The more eyes we can get on this, the more lives we will save!”
The family created the @amatchformamag Instagram account to help find their mom a match.
Expert Myelofibrosis Resources
Third, she advises anyone who hasn’t yet signed up to order a free cheek swab to do so through the link in her Instagram bio.
“People of Asian descent are significantly underrepresented in the bone marrow donor registry—what this means is that when one of our own is diagnosed with blood or bone marrow cancer and needs a match to save their life, it is much harder for them to find a donor,” Grannis explained.
“This is where we come in—Asian people have a much greater chance of matching with someone of the same ethnic background. We can save each other, and we can do this by getting ourselves, our friends, siblings, cousins, children, etc, to join the registry.”
Despite searching the global registration of more than 40 million people, Grannis’ mom has yet to find a match.
“Registering is free and as easy as a cheek swab. Please consider signing up, if not for our mom, for all our AAPI family, now and in the future, who may find themselves in this place of need someday. We take care of us,” Grannis concluded. “Link in bio to register (no matter where on this beautiful planet you live).
“Thank you and please spread the word if you are moved to do so.”
How Does a Stem Cell Transplant Work?
Grannis’ mom is Japanese – so, she would match better with someone who is of the same background. However, Grannis has noted that “her perfect match could be anyone of any race, so ideally, everyone under the sun gets on the registry!”
When Grannis first shared the news about Trish back in January, she described her loving mom as “the actual light of the sun manifested in human form.”
Grannis continued, “She has more energy and effort and love and creativity than should be possible for any one person to possess, let alone such an adorably tiny one. her main goal in life is to spread happiness, and she fulfills this every single day. She is our everything.
“She has so many more drawings to draw, people’s days to make, projects to dream up, cookies to bake, grandchildren to meet. Please help us keep her here.”
What Happens After a Stem Cell Transplant?
Grannis reminds anyone aware of her mom’s condition that she is in need of a blood stem cell donor, not a bone marrow donor.
Her mom is in need of an allogeneic stem cell transplantation, which “involves the use of stem cells from someone other than the patient,” and the donor can be related or unrelated, the Leukemia and Lymphoma Society explains.
How Ethnicity Plays A Role In Donor Matching
According to Be The Match, the likelihood of any patient finding a matching bone marrow donor or cord blood unit on the Be The Match Registry “ranges from 29% to 79% depending on ethnic background.
“When it comes to matching human leukocyte antigen (HLA) types, a patient’s ethnic background is important in predicting the likelihood of finding a match,” Be The Match explains.
“This is because HLA markers used in matching are inherited. Some ethnic groups have more complex tissue types than others. So a person’s best chance of finding a donor may be with someone of the same ethnic background.”
Be The Match states that people of a Black or African American background have a 29% chance of finding a match.
As for Asian or Pacific Islanders, they have a 47% chance. Followed by Hispanic or Latino people having a 48% chance, Native Americans a 60% chance, and any of a White ethnic background having a 79% chance, through the Be The Match registry.
A virtual registration drive set up through DKMS, an international nonprofit organization working to fight against blood cancer and blood disorders, dubbed A Match for Mama G, offers some more details on how and why people should register.
“The likelihood of Asians and other people of color finding a match is significantly lower due to a lack of representation in the registry. Let’s change that,” Grannis writes on her mom’s virtual drive page.
“You can register if you’re between the ages of 18-55. If you fall outside of that range, please consider sharing with people of those ages. If you don’t match with Mama G, there’s still a chance you could match with someone else and save their life.”
Additionally, the Stem Cell Club explains how South Asians make up one-fifth of the world’s population, yet there are less than 2% of listed donors of South Asian descent.
The Stem Cell Club says South Asian patients have only a 40% chance of finding an unrelated donor, as opposed to those of European descent who have 75% chance.
Managing Myelofibrosis: The Rare Bone Marrow Cancer Kina Grannis’ Mom Is Battling
How myelofibrosis, the bone marrow cancer Kina Grannis’ mom is battling, affects your life will depend on the characteristics of your disease and how you are being treated.
Myelofibrosis is a rare type of bone marrow cancer that can cause scarring in the bone marrow and anemia, in which the body does not have enough healthy blood cells. It is part of a group of diseases known as myeloproliferative neoplasms.
Some patients have no, or very few, symptoms from the disease and do not require immediate treatment, while others may require an aggressive approach.
RELATED: What are myeloproliferative neoplasms?
“Very few patients are fortunate enough where there is not significant symptom burden from their disease, and they may not require therapy,” Dr. Abdulraheem Yacoub, a hematologist at the University of Kansas Medical Center, previously told SurvivorNet.
Living With Myelofibrosis: How to Manage the Day-to-Day
“Some patients have low-risk disease and no symptoms and they can be managed without any medical therapy … but that is the minority of patients. The majority of patients with myelofibrosis have symptoms that interfere with their daily living, and their quality of life — and they would benefit from interventions.”
Dr. Yacoub adds that there are many tools that can be used to treat these patients and improve their quality of life.
Making Treatment Choices–SurvivorNet’s Carefully Constructed Resources
Contributing: SurvivorNet Staff
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