Easter Sunday 2013 is a day that one Minnesota family will never forget. Earlier that spring, Glennae Meyer began to notice that her 8-month-old son, Ari, was not his smiley, happy self. In the weeks following, Ari would go hours without eating, continuously battled ear infections and pneumonia. He was given an oxygen machine to help him breathe – all while his white blood cell count dropped to a scarily low level. By Easter, Ari’s doctors had finally diagnosed him with Hyper-IgM, an auto-immune deficiency.
They told Glennae that a marrow transplant was Ari’s best chance for a cure, but like 70 percent of patients, Ari did not have a fully-matched donor in his family. Ari spent seven weeks in the hospital before receiving his lifesaving marrow transplant from an anonymous donor in July of 2013.
Now, more than three years later, Ari continues to get stronger. He and his family try to attend the Be The Match Walk+Run in Minneapolis each year – an event bringing together Be The Match supporters, transplant recipients, donors, searching patients, and their families and friends.
Last year, Minnesota Senator Amy Klobuchar (D) attended the Minneapolis Walk+Run, in support of those affected by blood cancers and other diseases – like Ari and his family. She spoke to the crowd before the race about the importance of bone marrow and stem cell transplantation. She also talked about her support for funding the C.W. Bill Young Cell Transplantation Program.
Encouraging your legislators to join community events that are important to you is a great way to get them involved and understanding of the issues that matter to you most. Learn more about Be The Match Walk+Run events.
Daniel was high school senior when he first became interested in marrow donation while writing a speech about Be The Match. He decided to join the registry, and was selected as a match just 3 months later. While he waited to donate, he started Indiana University’s Be The Match on Campus chapter. In spring 2014, Daniel donated PBSC to Missy, a wife and mother to 3 children. The transplant was a success, and the two became friends—determined to share their story to inspire others to join. In addition to hosting donor drives, he and Missy worked on a project to introduce legislation making it easier for moms in Indiana to donate their baby’s umbilical cord blood.
Unfortunately, Missy fell ill unexpectedly and passed away in 2016. In her honor, Daniel started Matches for Missy. Today, Daniel is the president of the Be The Match Inaugural National Committee, and has raised close to $20,000 to help patients and their families. Daniel was recognized a Volunteer of the Year at Be The Match Council Meeting.
About 6 months after her transplant in 2014, Lola felt burning and discomfort near her vagina. She went to the doctor many times and over the course of 18 months she had treatment for a urethra blockage and low hormones from menopause. Finally, her doctors determined the cause was graft-versus-host disease (GVHD) of the vagina and vulva.
Symptoms of GVHD of the vagina and vulva
Chronic GVHD of the vulva and vagina happens when the donor cells attack these tissues. The vulva is the outer part of the vagina (birth canal). According to Pamela Stratton, MD from the National Institutes of Health, it’s important to notice changes in your genitals and tell your transplant team or gynecologist about those changes. “If you know it could happen and start feeling the burning sensation, then you might go to the gynecologist and get treatment,” says Lola.
Some of the common symptoms for vulvar and vaginal GVHD include:
- Pain with urination, while at rest or during vaginal sex
- Redness or open sores in the vulva or vagina
Diagnosing GVHD of the vulva and vagina
“Chronic GVHD of the vulva is very common. It affects about 1 in 4 women after transplant. Vaginal chronic GVHD is less common. Since the vulva and vagina are different parts of your anatomy, treating one area of chronic GVHD doesn’t prevent or lower your risk of getting chronic GVHD in the other area,” Dr. Pamela Stratton says.
It’s important to diagnose chronic GVHD of the vulva and vagina early because early treatment can ease your symptoms faster. It also lowers the chances of it becoming a more serious problem. Doctors diagnose it with a gynecological exam. “They may take cultures and a tissue sample to diagnose chronic GVHD and rule out an infection or other problem,” says Dr. Stratton. For Lola, she felt relieved when she got the diagnosis. She no longer felt alone, but was encouraged to know what it was and learn how she could deal with it.
Management and treatment
Soon after Lola’s diagnosis, she started treatment with a topical steroid. Dilators or vaginal sex can also help keep the vagina from narrowing or closing. Currently, there is no known way to lower your risk of getting chronic GVHD of the vulva or vagina.
Each woman has different symptoms at different times, so it’s important for the gynecologist and transplant team to work together to offer the best treatment. “Treating specific genital GVHD changes is an important first step. Women also benefit from a multidisciplinary team approach to their reproductive health with members of the team including gynecology, urology, and sexual therapy specialists, as well as pharmacists. This team can help address effects associated with chronic GVHD including depression, stress, and menopausal changes,” Dr. Stratton says. Lola agrees, “It can cause depression. Talk to your health care team. You’re not complaining, but people don’t know you’re having a problem unless you tell them.”
Your quality of life is important, and that includes your sexual relationships. Lola encourages other women going through this to not be shy. “Modesty is difficult for a lot of people to overcome. So stand in front of a mirror and say the words ‘vagina’ and ‘vulva’ a lot until it becomes normal. Your vagina is a part of your anatomy like your elbow except it’s not out in public. And all women have one.” Talk openly with your health care team and sexual partner about how you feel. This is important for your health, your quality of life and your recovery.
For more information
- Contact the Be The Match Patient Support Center. Receive free counseling support from a licensed BMT social worker to help you and your family cope with GVHD. Call 1 (888) 999-6743 or email email@example.com.
- Download Fast Facts: Chronic GVHD of the Vulva and Vagina. The fact sheet offers information on how to ease symptoms, how it can be treated, and when to call your doctor. It was developed by Be The Match and the Chronic Graft-versus-Host Disease Consortium.
The emotional stress of illness and recovery affects transplant recipients and caregivers. For parent caregivers, caring for your child can strain your relationship. It can be easy to lose touch with your partner when you need that support and connection the most.
Some people develop a deeper appreciation for each other after transplant. But others may feel frustrated or depressed about changes in their relationship. Sometimes one partner is happy with the relationship but the other partner is unhappy.
Start the conversation
Sometimes it’s hard to find the ‘right’ words to share your feelings with your partner. Still, sharing your feelings honestly and with compassion can help strengthen your relationship. You might talk about:
- The good and the bad with a focus on solutions,
- How you’d like things to be, and
- Your own feelings and actions you can take.
Be mindful to:
- Not interrupt your partner. Let them know you’re listening by saying, “I hear you.”
- Use “I” statements instead of “you.” Statements that start with “you” can put people on the defensive. Instead of “You make me feel …” say “I feel (name the emotion) when (name the behavior) and (state what you need to happen).” For example, “I feel hurt when I’m shouted at. It would be helpful if we could talk about our feelings calmly.”
“It’s important for couples to talk about all the changes they’ve been through, how they feel about them, and how they affect their priorities and plans for the future,” says Diane, MPH, BMT Patient Navigator at Be The Match®.
Some questions that can help you and your partner talk about your relationship are:
- How is your communication? Has it changed?
- Do you feel emotionally close, or distant?
- Do you share the same expectations about recovery?
- Do you share the same goals for the future?
- Have your roles changed? How do you feel about that?
- How do you feel about your sexual intimacy? How might you want it to change?
Your sexual health and intimacy is an important part of your recovery and life after transplant. But many people struggle with this after transplant. Intimacy starts with communication.
If you’re in a relationship, talking about your feelings can help build physical intimacy. Explore ways to be intimate with your partner without having sex:
- Give each other a massage
- Tell each other what you love about the other
If you’re single, you may have worries about dating again. Remember, someone who truly cares about you will accept you for who you are and what you’ve been through. When the time feels right, tell your partner about your transplant experience. Some people are ready to share this right way. Others feel more comfortable waiting until they know someone a little better. There’s no right or wrong way to share your experience.
It may be hard for you and your partner to adjust to changes in relationships and intimacy after transplant. You are not alone. And help is available.
Support groups can be safe places to talk about your relationship with others who understand. A licensed social worker can help you talk about issues and find ways to solve problems.
The Be The Match Patient Support Center offers counseling services. We provide one-on-one support by phone to help you and your loved ones cope with transplant and recovery.
What if we told you it’s easy for you to do just that – right now?
For many patients, the hope of receiving a bone marrow transplant is the lifeline to a cure. We know the donor process can seem daunting, so we’re here to help walk you through it. You’re one step closer to being a lifeline for individuals in need.
Joining the Be The Match Registry® is fast, easy, and painless. You provide a simple swab of cheek cells and your tissue type will determine whether you are a match for waiting patients.
The need is urgent, and the gift of time isn’t given to all. For Chris Contreras, one match will be the difference between life and death. It’s possible that you could be that life-saving match.
It was an unassuming Monday when Chris, his wife Stacy, and their three children found their lives uprooted without warning. Chris’ world was forever changed during a simple game of squash. “I went for a ball towards the glass and hit my elbow,” Chris recalls. “A couple of days later I had an inflamed elbow [and] went to the doctor.” His injury puzzled medical professionals.
Months of testing and waiting followed. When the Contreras family finally received their answer, it was far from what they had hoped to hear. The diagnosis was aplastic anemia: a serious blood disorder. For Chris and others, a fatal disease.
Chris will die unless he finds his one chance for a cure. He has to find a specific someone – the perfect match – for a bone marrow transplant. “How do you tell your kids what’s going on?” Chris says through tears. “Trying to tell young kids – especially your own kids – what you’re going through is hard.”
Amidst their hope for a match, the Contreras family has struggled for answers to some of life’s biggest questions. As Stacy explains, “I used to ask ‘Why? Why is this happening to us?’ … Until I took it and I thought ‘I can take this and do a lot.’”
The family began hosting drives to add more people to the registry. To date, hundreds of people have joined and six people have been matched to other patients in need of a transplant.
In the face of a devastating diagnosis, Chris, his wife Stacy, and their three children have grown closer, but their time is running out.
“Knowing that there’s not a match for me yet today, it’s tough,” says Chris.
How You Can Help
Join the registry today to see if you are a match for Chris and patients like him.
You may match someone months or years from now – or you may never be called to donate. That’s okay too. It’s important to stay committed, so that if and when a patient needs you, you’re ready for them.
Already on the registry? Help us spread the word. Together, we can help more patients.
Ethnic Background Matters
Did you know that patients are more likely to match with others of the same ancestry? That’s why we’re especially interested in expanding the ethnic diversity of donor registrants. We have an increased need for donors of the following backgrounds:
- Black or African American
- American Indian or Alaska Native
- Asian, including South Asian
- Native Hawaiian or other Pacific Islander
- Hispanic or Latino
Many people die before finding a match. It doesn’t have to be that way. The more people who register, the greater likelihood a match will be found.
Give waiting patients and their families more tomorrows. Join today.
Be The Match Success Stories
Your decision to register could be a new beginning for waiting patients like Chris. These are just a few patients’ life-changing transplant stories.
- Your self-sacrifice saved our daughter’s life: Parent’s personal thank you to a donor
- A single mother’s transplant story
- Family ties
The impact of a successful transplant extends beyond patients and their families. Donors become heroes. If you’re curious about what the process feels like, click the links below.
- College football player stays true to his commitment
- Marrow donor Johnathan: “Be the change you want to see in the world”
- An unusual twist of fate: Erma’s story
- Paul, marrow donor, explains donation process
So here’s the final question: Are you ready to become part of someone’s success story? Embrace the power of being the cure. Take the time to save a life. http://bit.ly/2lv0VrU
Jeff’s whole life changed when he was diagnosed with blood cancer. After numerous treatments, his doctor told him that his best chance for a cure was a bone marrow transplant. His doctors turned to Be The Match in search of an unrelated donor. In January of 2015, Jeff had his transplant.
One year after receiving his life-saving bone marrow transplant, Jeff has decided that an important and natural next step is advocating for others facing similar situations that he went through last year.
“I was inspired by having to face leukemia and fighting my way through the disease all the way to a successful bone marrow transplant,” Jeff said.
Currently, Jeff volunteers with Be The Match in the Peer Connect Program as a mentor for other marrow transplant recipients. Upon retiring from his law practice later this year, Jeff plans to fully enjoy his hobbies which include horses and music. He also hopes to use his law background to help advocate with legislators and insurance organizations on behalf of transplant patients and their families.
Jeff says, “After staring death in the eye and coming through that, it felt natural that I would give back to the community and help in the fight to cure cancer as well as helping others who are going through it.”
Get involved with Be The Match legislative advocacy
We need your help to make sure that Congress remembers the importance of the programs that fund Be The Match®, the CW Bill Young Cell Transplantation Program (Program) and the National Cord Blood Inventory (NCBI).
For each $1 million the Congress adds to the Program funding, 10,000 donors can be added to the registry. For each $1 million it adds to the NBCI, we can add 667 cord blood units. Please send an email or social media message to your congressional representatives to ask for increased funding for these life-saving programs. Act now: Urge your legislators to continue funding Be The Match.
Every dollar allocated by Congress goes to increasing the number of donors and cord blood units on the registry, helping patients navigate the complexities of the health care system, and supporting research to discover and apply the best therapies to improve patient outcomes. Further ethnic diversity in registry members is extremely important as we continue to expand access to treat more diseases, such as sickle cell disease.
Program Funding Determined by April
Congress has until the end of April to fund the federal government through the end of Fiscal Year (FY) 2017. Funding for the CW Bill Young Cell Transplantation Program, which the National Marrow Donor Program®/Be The Match® operates under a contract with the Department of Health and Human Services, is part of these appropriations.
The legislation will also fund the National Cord Blood Inventory (NCBI) through the end of 2017. The House appropriations bill under consideration would maintain funding for the CW Bill Young Cell Transplantation Program at $22 million and increase funding for the NCBI by $5 million to $16 million.
The Senate bill would maintain current funding for both the CW Bill Young Cell Transplantation Program and NCBI ($11 million). We anticipate that Congress will resolve these differences in the coming months and pass final legislation in mid- to late-April.
At the same time, Congress will begin the process for funding the federal government for FY 2018. This process usually begins with a detailed budget request from the President. Given the transition to a new Administration, it is unlikely that we will see a detailed budget before late April or May. The congressional committees overseeing appropriations, however, are likely to start considering specific spending levels well before that time. Final legislation appropriating funds for FY 2018 is unlikely to pass before September and might even be delayed until December 2017.
Get involved with Be The Match legislative advocacy
You can make a difference in the lives of patients with blood cancers. We invite you to sign-up for our Be The Voice enewsletter to receive monthly updates on our advocacy efforts and how you can get involved to support our legislative advocacy efforts.
On January 3, the 115th United States Congress was sworn-in in Washington, DC. Although repealing “Obamacare” (also known as the Affordable Care Act) has dominated the news about this new Congress, it has a full plate of issues that it plans to address in the coming year. Several of these issues will impact access to marrow and cord blood transplant:
Funding the CW Bill Young Cell Transplantation Program and the National Cord Blood Inventory through the end of Fiscal Year (FY) 2017 and for all of FY 2018. The CW Bill Young Cell Transplantation Program provides funding to support the Be The Match Registry®. And the National Cord Blood Inventory provides funding to support the collection and maintenance of cord blood units used for transplant.
Each year, Congress must decide whether it will continue to fund these programs. This year Congress will finish the work it began in 2016 to appropriate funding through September 2017. It will also establish funding for October 2017 through September 2018. We need your help to advocate for continued funding of these programs that support our mission and help ensure patients have continued access to transplant.
- Medicare payment reform. Both the U.S. House and Senate plan to address a variety of Medicare payment rulings in the coming year. These bills may include reforming hospital payments and could provide us with an opportunity to address the problem of Medicare rates not adequately covering the cost of acquiring bone marrow and cord blood for transplants.
- Reauthorization of the State Children’s Health Insurance Program (CHIP) and potential Medicaid reform. The Congress also must review the CHIP program that provides health care coverage to millions of children across the country. This legislation may provide an opportunity to address ongoing concerns about State Medicaid programs as well.
We will continue to work with members of Congress to make sure that as policies evolve, Congress continues to protect access and remove barriers to life-saving transplants. And we’ll reach out to our advocates to support these efforts throughout the year.
Get involved with Be The Match® legislative advocacy
You can make a difference in the lives of patients with blood cancers. We invite you to sign up for our Be The Voice enewsletter to receive monthly updates on our advocacy efforts and how you can get involved to support our legislative advocacy efforts.
Jason Carter, of Wayzata, Minn., battled leukemia for 4½ years, and his family’s extensive search for clinical trials helped extend his life and their time together. Sadly, he passed away in May 2016. He was 28 years old.
“We hoped Jason would live long enough to find a cure,” said Jason’s parents, Robert and Diana Carter. “He tried every new treatment and new therapy possible. It was still not enough. Only 5 percent of cancer patients take part in clinical trials. That number must greatly increase for outcomes to improve more quickly.”
The challenges and frustrations the Carter family faced in their search for clinical trials inspired them to honor Jason’s life by donating $1.25 million to Be The Match Foundation to fund the Jason Carter Clinical Trials Program to help patients identify and enroll in clinical trials more efficiently.
“Jason wanted to make a difference” said Diana Carter. “We are thrilled to partner with Be The Match to improve this process and help other patients find the best treatment resources available. Together, we can help save lives.”
“This donation from the Carter family will have a profound impact on patients and families for years to come,” said Joy King, Senior Vice President of Philanthropy and Executive Director for Be The Match Foundation. “We could not be more honored and excited to carry out Jason’s legacy through this new program. We sincerely thank the Carter Family for their generosity and compassion for all patients.”
Learn more about the Jason Carter Clinical Trials Program.
In honor of the 2017 Martin Luther King, Jr. Day of Service, we honor super-volunteer Karen Milne, who dedicates her time and expertise to Be The Match®.Show Content
Typically, when someone considers volunteering their time, they align with an organization or cause that has personally impacted their life. For Be The Match skills-based volunteer Karen Milne, the opposite scenario occurred – with no prior connection to the mission, she started volunteering her time and talents to Be The Match, and has impacted the organization and our employees in ways we couldn’t have imagined.
It all began when Karen retired from her career of 31 years as a legal assistant in a downtown law firm and knew that she wanted to spend her days volunteering in some capacity. Looking for opportunities to help, she thought of the NMDP/Be The Match as her firm had represented both for a few years. Mutual friends between her previous employer and Be The Match Foundation led to a phone call and quick realization that Karen would be a perfect volunteer for the annual Be The Match Gala. With experience in planning large events and campaigns, what started out as an intent to sporadically volunteer in her free time has led to an annual four-month commitment to organizing the Be The Match Gala Auction.
Working to help the present and future
Since 2013, Karen has given over 580 hours of her time to helping organize not only the Annual Gala’s auction, but also to mentor Be The Match Foundation service interns. Often referred to as “The Great Connector” among Foundation employees, Karen is able to lead the service intern team over the summer in assisting with the upcoming Gala, and connect their work with that of the core Foundation team. Her leadership has allowed the service interns to thrive, and gain valuable experience each summer in their work with the Foundation.
“By example, my parents taught me to always give back. This is a meaningful way to fulfill giving back. There is an anonymous quote that says, ‘A person’s most valuable asset is not a head full of knowledge; but a heart full of love, an ear ready to listen and a hand willing to help others.’ I want to always be that person and Be The Match helps me do that,” Karen says.
The Exception to the Rule
A typical volunteer for Be The Match gives approximately 17 hours per year, ranging in positions from in-person registration volunteers, event-day volunteers, and volunteers like Karen – who help with event preparation. Each year, Be The Match Foundation looks for volunteers they refer to as “Go Getters” to work on the annual gala. Being a “Go Getter” is more of a state of mind than anything. They are motivated individuals who go out of their way to make an impact on the service they’re offering.
While Karen technically volunteers as a “Go Getter”, her contribution of time and expertise goes far beyond the expectations of the role – she is the epitome of “the exception to the rule”. While she knows that she is in no way obligated to help out as much as she does, Karen still spends hours each year dedicated to the Be The Match mission – which includes spreading awareness. Her contributions are irreplaceable, and appreciated more than she knows.
Want to get involved too?
If you’re looking for ways to support Be The Match, volunteering for an event like the annual Be The Match Gala may be perfect for you! If you’re in the Twin Cities area, check out our Gala Volunteers page. You can also visit BeTheMatchVolunteer.org for information on other opportunities.