Spotlight on long-time Be The Match Volunteers

Posted August 9th, 2018 by Be The Match and filed in Volunteer Stories
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When Karen Lorentz’s three year old son Bob needed a live-saving bone marrow transplant, she became involved with Be The Match.  21 years later, Bob is cancer free and Karen and her community have found a way to give back to help support other families in need of similar live-saving treatments.

She and her neighbors have rallied behind Be The Match and its mission by becoming volunteer couriers.  Karen, her husband, and their friends John and LeAnn Savereide are all now volunteer couriers for Be The Match.  In 2017, Be The Match volunteers contributed over 164,000 hours dedicated to all aspects of our mission, saving nearly 6,100 lives including our 337 volunteer couriers that completed 2,268 product deliveries.

Be The Match offers many different volunteer opportunities, allowing those individuals to have a direct impact on patients with blood cancers and diseases. John’s advice is to “apply and hope you are selected. It has to be one of the most interesting and rewarding volunteer opportunities that exists.” John also says that the most rewarding aspect of volunteering with Be The Match is thinking about the patients receiving the product, and what it means for them and their families.

According to Karen’s neighbor LeAnn, who is also a volunteer courier, “The most rewarding aspect of this job is thinking about the people waiting for the product and what it means for them. Having loved ones who have received an unrelated match I know how important it is.” By confidentially delivering these life-saving stem cell treatments to patients in need, the volunteers feel a sense of responsibility, hope, and satisfaction.

When asked why she has continued her work as a volunteer with Be The Match, Karen says, “Well, quite simply, I am addicted to saving lives. I have had many volunteer jobs over the years and this one I find to be the most rewarding. Someone 21 years ago volunteered to save my little boy’s life and a courier delivered the lifesaving cells to us. It gives me great satisfaction to think I am now a courier and able to do this for a patient, and giving back something that was given to me.” Watch their video to hear more of their story and what it means to be a volunteer courier

Be The Match volunteers are needed across the nation and there is something for everyone.  Whether you want to help out at fundraisers, support our mission or work directly with patients and donors, you can help deliver hope for patients and families dealing with blood cancers and diseases.  If you are interested in learning more, visit https://www.bethematchvolunteer.org/

Super Star Advcocate: Caron Myers

Posted August 6th, 2018 by Be The Match and filed in News
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Back in 1983, Caron’s sweet, 5-year-old daughter Brandy was diagnosed with cancer. The previous year, doctors thought her illness was just juvenile rheumatoid arthritis. Months later, they found out how wrong they were. She was diagnosed with Stage 4 lymphoblastic lymphoma, a sister disease to leukemia. For the next three years, she was treated with a series of intensive chemotherapy. After a tough fight, she went into remission and was stable for about a year.

Just as the following March winds began to blow, so did a relapse of the disease. At that point, she relapsed with Stage 4 Acute Lymphocytic Leukemia (ALL), and doctors said her only hope would be blood stem cell transplant. The year was 1986.

There are two factors in Brandy and Caron’s story that played into the development of the C.W. Bill Young Transplantation Program and the start to NMDP/Be The Match. Brandy’s primary pediatric oncologist was Dr. Jerry Barbosa. But, a new doctor had joined forces with Brandy’s hospital – All Children’s Hospital in St. Petersburg, Florida. His name was Dr. Robert Goode, and he was helping develop a new bone marrow wing for the oncology unit. He was known to his fellow doctors as “the father of bone marrow transplantation.”

Caron’s father, on the other hand, was involved in politics, and her family had close relationships with many political figures. During Brandy’s fight, she met President Ronald Reagan, at the behest of Senator Paula Hawkins, then Vice President George H.W. Bush and Second Lady Barbara Bush. Her family also had a close relationship with Congressman C.W. Bill Young who would often visit the hospital and regularly check on Brandy’s condition.

Congressman Young wanted to help not only Caron and Brandy, but others dealing with the same kind of pain from life-threatening blood cancers and blood diseases. Caron asked Congressman Young, “With the advent of computers and blood banks, why can’t [the doctors] merge things together to create some sort of clearing house, so it would help everyone?” He went to work on finding a solution, which would ultimately result in the C.W. Bill Young Cell Transplantation Program operated by the National Marrow Donor Program/Be The Match.

Unfortunately, at the time, the registry was in the very early stages of development. Brandy’s only option was to receive an autologous blood stem cell transplant, meaning she would be her own donor. Brandy had to travel to the University of Minnesota where she received the transplant, which was her only chance at survival. Sadly, on Mother’s Day 1987, Brandy died.

Congressman Young was one of the first phone calls Caron received, as well as condolences from the Reagans, the Bush family and many other members of Congress who had supported the legislation. In the Congressman’s address to the House floor, he mentioned Brandy—she inspired legislation that helped others find a match on the program’s registry and helped cure life-threatening diseases like her own.

Caron continues to use Brandy’s story as an opportunity to persuade policymakers to help others. She has been fearless in her advocacy. As Caron says, “They put their pants on the same way you and I do. Many of them come from humble beginnings. Everyone has a story, and politicians are no different.”

Jason Carter Clinical Trials Program: One year of helping patients find clinical trials

Posted July 9th, 2018 by Be The Match and filed in News
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Every year, thousands of patients are diagnosed with blood cancers and other life-threatening diseases. For many patients, treatment through clinical trials provides hope and a potential cure.

But finding clinical trials can be challenging, so the NMDP/Be The Match partnered with the Jason Carter Clinical Trials Program (JCCTP) to help patients find and join clinical trials. At the heart of the JCCTP is a patient-friendly website, which is marking its one-year anniversary in July.

How the JCCTP website helps patients and their families

More than 250,000 clinical trials are listed on the U.S. government’s ClinicalTrials.gov website. However, these trial listings are very technical and patients have a hard time determining if they are eligible to join a particular trial. To make it easier on patients and their families, NMDP/Be The Match has found the most relevant clinical trials for patients with blood cancers and blood disorders and rewritten them to make them easier to understand. In the first year of the program, over 1,200 clinical trials have been added to the JCCTP website in a way that makes them much more accessible for everyone.

Financial assistance to help with travel to clinical trials

Last fall, The Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant was created in partnership with the JCCTP to provide financial help to qualified patients. The first travel grant was awarded in November and the patient received help paying the necessary travel costs for clinical trials, including:

  • Patient and companion air travel: booked by dedicated travel agents
  • Ground transportation: gas, parking and public/mass transit (bus/train/cab/etc.)
  • Accommodations: hotel, temporary housing and incidentals

Recognition for the JCCTP

In May, NMDP/Be The Match was presented with the Innovation Programs Award for the JCCTP at the 2018 Institute for Healthcare Advancement Health Literacy Conference. This award shows just how important it is to have a program that offers the much needed assistance to those that are seeking more information on how to find the right clinical trials.

Other features of the JCCTP

Even after using the search tool to find clinical trials that may be a good fit, patients and their families may have more questions.

As part of the JCCTP, NMDP/Be The Match has a full-time Clinical Trial Patient Education Specialist to provide free one-on-one support by phone and email to help patients and families find and join clinical trials.

Scott Kerwin, MN, RN, CCRC, CCRN, is the JCCTP Clinical Trial Patient Education Specialist, and he says that the most valuable help he provides is navigating the clinical trial system. “Because of my many years of working in hospitals as a bedside and clinical research nurse, I know how the system works,” he says. “I know how to contact the right people in the right roles.”

To contact Scott, call 1(888) 814-8610 or email clinicaltrials@jcctp.org.

About the Jason Carter Clinical Trials Program

The JCCTP is funded by the Carter family, in memory of their son and brother, Jason Carter, who lived with leukemia for more than 4 years, passing away in May 2016, at age 28. He participated in 2 clinical trials, which gave him more time with his family.

Returning to work after transplant: Tips for success

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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Doctors usually suggest transplant recipients wait at least 1 year before going back to work after transplant. That’s because it can take a year or more for your immune system to recover.

When, or if, you return to work after transplant should be up to you and your doctor. You may want to return to work as soon as possible because you want to regain a part of your life before transplant. Or, maybe you need the income from a job. Whatever the reason, we have tips on how to ease yourself back into the working world.

Dealing with an “employment gap”

Because you didn’t work during your transplant recovery, your résumé will show a length of time when you were not employed. This can be difficult to discuss during a job interview.

Remember, federal law prohibits your health history from being used against you when you return to work or look for a new job. And if you’re looking for a new job, companies can’t ask about your health history and you aren’t required to tell them about it unless you choose to do so.

Still, it can be a difficult decision. Karen, a transplant recipient, has struggled with what to say during interviews. Would her story of recovery show strength and how she had overcome so many obstacles?

Karen chose to fill the gap in her employment by highlighting her volunteer work ─ and in fact put that at the top of her résumé. “There are keywords that say ‘volunteer work’,” says Karen. “It’s what I’m doing, it’s where my skills are at, and it’s my experience.”

Preparing for physical and emotional demands in the workplace

It can be physically and emotionally difficult to return to work after an extended leave after transplant.

“Work is demanding and patients often worry about whether they will be able to respond to the pace and requirements,” says Katie Schoeppner, MSW, LICSW, and Supervisor of Be The Match® Counseling Services. “Many patients describe symptoms of ‘chemo-brain’ that can affect short-term memory or make it hard to organize thoughts.”

To help manage those issues, Katie recommends “coping ahead of time” by thinking of situations or aspects of work that may be difficult and prepare for them. “For instance, come up with a plan for setting reminders (post-it notes, a calendar, an alarm) if you’re concerned about managing a lot of demands,” she says.

For Herschel, a transplant recipient who returned to his previous job, it was important to take things slowly at first. “When you return to work, you need to take your time,” he says. “You don’t have to impress anyone. Give yourself permission to take it easy, and one day, you’ll begin to see that you’re accomplishing tasks in a very real and effective way.”

Katie also has suggestions on how to tactfully deal with co-workers who may ask a lot of unwanted questions about your disease and treatment. As part of a “coping ahead” strategy, Katie recommends that you think about the kinds of questions you may be asked about your time away. “Then, come up with an ‘elevator speech’ that you can use to move quickly through those conversations,” she says.

Benefits of returning to work

For many people, work not only provides financial stability, it also gives a sense of purpose, identity and belonging.

This was especially true for Karen. At her first job after her transplant, she says that it felt so good just to get up and shower and have a place to go. “It’s a first step,” she says. “If it takes baby steps, one day at a time, get out there as soon as you can before you get seized by paralysis.”

Work provides structure to our days, plus social interaction that plays a major role in a person’s self-esteem. “It speaks to identity,” says Karen.

When work seems out of reach

Even if you want to go back to work, it’s not always easy to find the right job for you. Karen, who’s seeking work after transplant now, says “before transplant, I had a sense of pride in my work. Now, people don’t see that side of me or that my skin is covered with GVHD. They don’t know my story.”

If you’re struggling to find work after BMT, Katie recommends “seeking out volunteer and networking opportunities in their community.” They can be a great way to build up a résumé and open doors to possible employment.

Sometimes life after transplant can be an opportunity to consider a new type of work. Take stock of your relationships and values – think through what and who is most important to you now. Use that list to guide how you spend your time. “Then, consider doing some informational interviews with people in jobs that seem interesting to you,” says Katie.

For Karen, the experience of illness, treatment and recovery has changed her focus of what she wants to do. “I feel drawn to non-profit and service oriented jobs.”

Practical tips on going back to work

Our Living Now series of newsletters have additional tips on life after transplant. View or download Living Now, Issue 3 to find an article on going back to work or school on pages 6-8.

In addition, the Be The Match Patient Support Center can help you find resources and cope with job-seeking and work after transplant. Some resources include:

Coping with body image changes after transplant

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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There are many side effects of a blood or marrow transplant (BMT) that can impact your body image. These include hair loss, skin and muscle changes, and weight gain or loss. Some side effects, such as fatigue (feeling tired), aren’t visible, but can still affect your body image.

What is body image?

Your body image is how you see your body and how you feel about it. After transplant some people may see the changes in their body and feel embarrassed or self-conscious. Others may see the strength it took to get through treatment and feel proud of their body.

Worrying about body image can happen because of the changes to your body and because the changes remind you of the disease and treatment.

Watch for signs of body image concerns

If you don’t feel good about your body after transplant, you’re not alone. You may have body image concerns if you:

  • Are very unhappy with your physical appearance
  • Feel worried about physical changes in your body
  • Avoid social situations due to your appearance
  • Are stressed about or avoid romantic relationships due to changes in your body

If you or your loved one has any of these signs, help is available and there are ways to cope.

Talk about your body image with a trusted person

While it may not seem easy to bring up with your health care team, talking about your body image is important.

“In busy clinics, health care providers may not see your distress about body image and the impact on your life,” says D. Kathryn Tierney, Ph.D., RN, Clinical Assistant Professor from Stanford Health Care. So it’s important to tell them about any body image concerns you have. Don’t wait for them to ask. Say something like, “I know you’re focused on my physical health, but I’m really concerned about my appearance and how it’s changed since transplant. Can we talk about that?”

Many transplant centers have support groups that can help you cope with body image changes. Your social worker or nurse coordinator can help you find resources near you.

Dr. Tierney also recommends a program through the American Cancer Society called Look Good Feel Better. This free program offers resources for men, women and teens to help cope with appearance-related side effects of chemotherapy and radiation.

In the future, Dr. Tierney says researchers may “compare talk therapy to support groups or other approaches to help people regain a healthy body image.” But in the meantime, her advice is to simply talk. She says, “A discussion with your doctor, a close friend or loved one can help.” Find a trusted person and tell them how you’re feeling.

Free support is available

The Be The Match Patient Support Center can help you cope with body image changes after BMT. We offer:

  • One-on-one counseling services with licensed clinical social workers. They can help you cope with emotional concerns, including body image issues. Each session takes place weekly, by phone, for up to 8 weeks. Learn more at: org/Counseling
  • Connections with another transplant recipient or caregiver volunteer. Our trained volunteers can listen and share personal experience by phone or email. Request a connection at: Borg/PeerConnect

Just for teens

Watch “Does this transplant make me look fat?” to hear teens and young adults talk about their body image concerns after transplant. Ask your transplant center if there is a teen group or program you can join to talk with others your age about your experiences.

Superstar Advocate: Ann Berkey

Posted July 9th, 2018 by Be The Match and filed in News
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Advocate Spotlight: Ann Berkey

Ann Berkey’s professional connection to the National Marrow Donor Program (NMDP)/Be The Match began in 2010 when she joined the Board of Directors. But her personal connection began a few years earlier, when her husband died of leukemia in 2009 because he couldn’t find a matched unrelated donor through Be The Match for a transplant.

She has also been a very active stem cell courier since she retired in 2014, and views that role as another way to “Pay it Forward.”

 

Tell us a bit about yourself, why are you so passionate about National Donor Marrow Program/Be The Match? How did you get involved?

In 2001, my husband was diagnosed with non-Hodgkin lymphoma (NHL) as a result of his exposure to Agent Orange during the Vietnam War. Although chemotherapy followed by an autologous bone marrow transplant extended his life for 7 years, he had no match for an allogeneic bone marrow transplant. His NHL eventually developed into acute myeloid leukemia, which was too far advanced for a cord blood transplant.

I was determined to do something to make sure no one else had the devastating experience that our family had. So I applied to be on the Be The Match Board of Directors, which I joined in October 2010.

I spent 45 years in government relations and policy, both within the federal government in Washington, D.C., and with two major corporations, mostly in health care and public policy. So learned and used my advocacy skills on both sides, which helps me in my role on the board of directors.

 

Advocacy and policy is a unique way to volunteer, what made you decide to take action?

Adequate reimbursement is a critical issue facing NMDP’s network and, in particular, the Medicare patients who need life-saving bone marrow transplants. As the widow of a Vietnam veteran, I also know that an appallingly large number of other Vietnam veterans, now covered by Medicare, are battling blood cancers as a result of their service in that war.

Medicare needs to ensure payment equity between those patients who receive solid organ transplants and those who receive “liquid” or bone marrow/stem cell transplants. A payment change will address financial issues currently encountered by hospitals serving Medicare beneficiaries.

Given my knowledge and experience in advocacy and policy, this effort afforded me a way to put both to use on behalf of NMDP/Be The Match.

 

You met with your lawmakers before your trip to Washington, D.C., so what advice would you give to someone who hasn’t worked with their lawmaker before?

Know the issue and the arguments on both sides. Provide the staff with no more than 3 concise reasons why they should take action on your issue. Be polite; make eye contact, leave them with a one-page summary sheet on the issue and send a short follow up note of thanks for their time and interest.

In many cases, you are meeting with young staff members who are inundated with issues and may not understand or appreciate the significance of your request. Give them examples of situations they can relate to. Be familiar enough with the congressional members, their interests and background to find common ground.

 

Do you have any advice for other advocates?

Despite the constant rhetoric about partisan conflict in Congress, it is always reassuring to see that many congressional offices do, in fact, work across the aisle with leadership or members from the other political party. The issues that NMDP/Be The Match champions are not divisive or political; they affect the lives of people these members might know!

Finally, remember that all politics is local. If you can give congressional staff specifics on how the issue affects people and organizations in their districts/states, you will provide them with more ammunition and incentive to take action. And above all, have fun! Talking to elected officials and their staff is part of our democratic right and privilege and you can have an impact on how they assess the issue and take action.

Why we launched @BTMPublicPolicy

Posted July 9th, 2018 by Be The Match and filed in News
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Phone2Action and Quorm have noted that 100% of Members of Congress are on Twitter and Facebook and most of those Members manage their Twitter account personally. They all have profiles on these platforms because they know that their constituents do too. Lawmakers have staff working for them to make sure they’re filled in on various issues, but they’re stretched thin when it comes to taking action on very specific policies. This is where civic engagement plays such an important role. If there are issues your organization cares about, using social media is one of the most straightforward ways for you to inform your legislators about issues that may not always be on their radar.

Rep. Joaquin Castro (D-TX) has said, “When there’s a big vote, and I want to know what my constituents are thinking … I ask my staff for an assessment of who’s called in for it and who’s called in against it—and then I’ll usually check social media myself.”

The number of emails into Members of Congress has increased exponentially, and while email is still a useful tool if you have the time to personalize your message, Twitter allows you to stay up-to-date with the latest on our health policy efforts as well as share your thoughts with your Members of Congress.

Even if you’re not on Twitter yet, take a moment to create an account and follow us. Take your advocacy to a new level and tweet!

Ask your Members of Congress to Protect Access to Bone Marrow and Cord Blood Transplants

Posted July 9th, 2018 by Be The Match and filed in Payer Policy
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As of today, there are 22 co-sponsors of HR 4215, the Protect Access to Cellular Transplant (PACT) Act of 2017.  We need your help to increase those numbers so that the House and Senate leadership take notice and try to pass the bill this summer. This legislation would not cost the federal government more money, but would require the Medicare program to pay transplant centers the cost of acquiring bone marrow, peripheral blood stem cells, and cord blood. Current Medicare rates leave hospitals with tens of thousands of dollars of costs that are not paid for by the program. Hospitals cannot shoulder this burden and access to transplants is at risk.  The policy in HR 4215 is one on which Medicare already relies for solid organs; it should apply the same policy to cellular transplants.

It is more important than ever that the Congress acts.  The Centers for Medicare & Medicaid Services (CMS), which operates the Medicare program, just closed the comment period on a new hospital payment rule at the end of June.  Although CMS received several hundred comments supporting a policy change, it is highly unlikely the agency will solve the problem as part of its rulemaking process.  For any change to take place, we need the Congress to act quickly before the new rates take effect October 1.

You can help by asking your Member of Congress to co-sponsor HR 4215 and support its immediate passage.  Act now to let your voice be heard.

Ed Plass and his impact with Be The Match

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In December of 2011, at age 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery. As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process.

Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match® with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” says Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.” Many of Ed’s experiences with transplant, recovery, and advocacy have been a family effort.

Ed is part of the Be The Match peer-to-peer counseling program for transplant patients, helps edit educational and support material, and was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a transplant recipient can give. Kate has also spoken at these events from a caregiver perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did.

It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered more than 400 hours with Be The Match, connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” Ed says.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry ®, and provide financial resources to patients and families in need Join us in our life-saving mission and give a monthly gift today.

My Sickle Cell Warrior Story: Memories of living with sickle cell disease and a life-changing decision

Posted June 19th, 2018 by Be The Match and filed in Patient Stories
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I have lived sickle cell free for nine years.

When I think about my life with sickle cell (SC), I remember my first day of kindergarten–closing my eyes to check if I was feeling pain anywhere in my body. I did not. I was feeling completely normal. That was the last time I would have that feeling for a long time.

My second memory was a nurse giving me a shot, and being surprised I didn’t cry or even flinch.

I told her there was no point in crying over the things you cannot change. I was resigned to living with pain from SC for the rest of my life.

In high school, every morning started with turning off the alarm, rolling over and taking a bunch of pills: hydroxyurea, penicillin and oxycodone. I even took the painkillers to school, to deal with the pain.

The pain was like slamming your finger in a door: the initial sharp pain, followed by a dull ache. The dull ache was my daily life. The sharp pain was a pain crisis.

When I was 16, I remember sitting down to dinner with my family. My dad said, “Your doctor told me about a doctor in Pittsburgh who is curing people with sickle cell disease. I want you to have a transplant.”

I didn’t know what a “transplant” was. I was looking forward to graduation, and applying to colleges. I had a life. I didn’t want to interrupt my plans for a “transplant.”

Then one day I had a pain crisis that landed me in the hospital. My doctors told me I had to be on blood thinners for the rest of my life. Then they couldn’t find a vein. I thought about a life in and out of hospitals, all the needles, all pills, all the pain.

That’s when I began to seriously consider a bone marrow transplant.

When I arrived at the transplant center to meet my doctor and the rest of the team, I thought they’d tell me how great transplant was and how fabulous I would feel afterwards. But they kept talking about what it involved, chemotherapy, isolation, and potential side effects. It sounded horrible. But they wanted me to understand what to expect. I just wanted to feel better. All I cared about was, can you fix my sickle cell and can you reverse the damage that it has done already?

Fortunately for me, my sister was a perfect match for me.  I went ahead and had the transplant. It was difficult, but the hardest part came afterward. I was immune-compromised on my 18th birthday. I had a huge chocolate cake I couldn’t eat. I had gifts I didn’t care about. I was worried about losing my insurance coverage because I turned 18. My mom had lost her job in Chicago because she spent so much time caring for me. Financially, it was very challenging, but our social workers helped us find grants and resources and our family helped fundraise. On top of all that, I was missing college interviews.

It took about a year after my transplant to accept that I no longer had SCD. It had been part of my life for so long, I had to figure out who I was without the disease. I had to unlearn old habits. Recovery was gradual, but eventually, my siblings were able to stop being careful around me, and my parents could breathe a sigh of relief.

My one regret is that I did not freeze my eggs before treatment, but having children was not my priority at 16.

Learning to adapt to life without sickle cell has been difficult, but life continues to get better. Sharing my story helps. I’m grateful for the experience and thankful to be alive.