From adversity to advocacy: The remarkable story of one chronic Graft-Versus-Host Disease patient

(BPT) – Michael Cramer was just an active teenager, enjoying recreational pursuits such as surfing and sailing. Then one day he was diagnosed with a rare form of cancer. After several different treatment attempts, he was matched with a bone marrow donor and both Cramer and his mother Ashlee hoped that would mean the end of his battle with cancer.At the time they did not know he would develop chronic Graft-Versus-Host Disease (cGVHD), a rare disease that can impact allogeneic (meaning cells come from a donor) blood and marrow transplant recipients. Depending on the severity of symptoms and number of organs affected, cGVHD can impair a person’s ability to engage in daily activities — and in severe cases may be life-threatening. Symptoms can occur at any time after a transplant when donor cells (the graft) attack the patient’s (the host’s) organs and/or tissues.While cGVHD can affect people in many different ways, Cramer has experienced fatigue, elevated liver enzymes, jaundice, skin dryness, rashes, mouth dryness and sensitivity, and very fragile skin. His liver symptoms became severe, leading to an extended hospitalization.Exploring treatment optionsWith his mother Ashlee by his side, Cramer’s doctors began to treat his cGVHD with various medications, including steroids, without success. Cramer was driven to learn about his condition and scoured the internet to become more informed. That search, along with a long talk with his doctors, led him to Rezurock® (belumosudil), a prescription medicine used to treat adults and children 12 years of age and older with cGVHD after a patient has received at least two prior treatments (systemic therapy) and they did not work.Given his prior failures on other medications, Cramer worked closely with his care team and was prescribed Rezurock.”My experience on Rezurock so far has been very good,” Cramer said. “I’m living my new life now, getting back into a rhythm, and I appreciate each and every single moment of it.”The most common side effects of Rezurock include infections, tiredness or weakness, nausea, diarrhea, shortness of breath, cough, swelling, bleeding, stomach (abdominal) pain, muscle or bone pain, headache, and high blood pressure. Patient experiences on Rezurock may vary so please talk to your doctor when making treatment decisions. Please see additional Important Safety Information in this article.Turning adversity into advocacyWanting to help people who have similar cGVHD stories, Cramer decided to share his experiences through TikTok, where he now has more than 100,000 followers.”As an advocate, you can explain what it’s like and speak out to help others,” Cramer explained. “Having cGVHD is very lonely, since not everybody knows about it. It’s very important to advocate for yourself and tell your doctors and nurses what you’re experiencing.”Throughout Cramer’s experience, his mother and caregiver, Ashlee, continues to support him. “Not everyone will get cGVHD, just like each person is different, and each case of cGVHD is different. Being positive or optimistic won’t prevent it, but it does impact how you live your life,” said Ashlee. “You have to adapt because you won’t be able to go back to your ‘previous life.’ Michael won’t be the surfer or sailor he was before cancer and cGVHD, but now we can enjoy walking on the beach after sunset. He can still enjoy things by adapting and staying positive.”Twenty-one-year-old Cramer is now working towards his undergraduate degree. He exercises indoors on his stationary bike and tries new hobbies like building elaborate Lego sets and is learning to play guitar.Cramer also continues speaking to patients by hosting a podcast with his mom called “Michael and Mom Talk Cancer” to spread awareness and information about his cancer and cGVHD journey, as well as his mom’s caregiver journey. Together, they know their advocacy will have a positive impact, especially for those experiencing cGVHD who need a community around them. He wants others to know there’s a medication out there that can work, and that there’s hope, even with this diagnosis. “It’s going to be difficult. But because you’re living with cGVHD, that means you’re still alive,” Cramer said. “Be as present as possible and be grateful for your friends, family, and the small moments that remind you that you can get through it.”Every patient’s experience is unique and results may vary. Remember, your doctor is your best source of information and be sure to ask your doctor any questions you may have. Learn more about cGVHD and a treatment option at www.REZUROCK.com.USEREZUROCK® (belumosudil) is a prescription medicine used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (chronic GVHD) after you have received at least 2 prior treatments (systemic therapy) and they did not work. It is not known if REZUROCK is safe and effective in children less than 12 years old.IMPORTANT SAFETY INFORMATIONBefore taking REZUROCK, tell your healthcare provider about all of your medical conditions, including if you:have kidney or liver problems.are pregnant or plan to become pregnant. REZUROCK can harm your unborn baby. If you are able to become pregnant, your healthcare provider will do a pregnancy test before starting treatment with REZUROCK. Tell your healthcare provider if you become pregnant or think you may be pregnant during treatment with REZUROCK.Females who can become pregnant should use effective birth control during treatment with REZUROCK and for at least 1 week after the last dose.Males with female partners who can become pregnant should use effective birth control during treatment with REZUROCK and for at least 1 week after the last dose.are breastfeeding or plan to breastfeed. It is not known if REZUROCK passes into breast milk. Do not breastfeed during treatment with REZUROCK and for at least 1 week after the last dose.Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. REZUROCK may affect the way other medicines work, and other medicines may affect the way REZUROCK works.Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist when you get a new medicine.How should I take REZUROCK?Take REZUROCK exactly as your healthcare provider tells you to take it.Do not change your dose or stop taking REZUROCK without first talking to your healthcare provider.Take REZUROCK 1 time a day with a meal.Take REZUROCK at about the same time each day.Swallow REZUROCK tablets whole with a glass of water.Do not cut, crush, or chew REZUROCK tablets.Your healthcare provider will do blood tests to check your liver at least 1 time a month during treatment with REZUROCK.If you miss a dose of REZUROCK, take it as soon as you remember on the same day. Take your next dose of REZUROCK at your regular time on the next day. Do not take extra doses of REZUROCK to make up for a missed dose.If you take too much REZUROCK, call your healthcare provider or go to the nearest hospital emergency room right away.What are the possible side effects of REZUROCK?The most common side effects of REZUROCK include:infectionstiredness or weaknessnauseadiarrheashortness of breathcoughswellingbleedingstomach (abdominal) painmuscle or bone painheadachehigh blood pressureYour healthcare provider may change your dose of REZUROCK, temporarily stop, or permanently stop treatment with REZUROCK if you have certain side effects.REZUROCK may affect fertility in males and females. Talk to your healthcare provider if this is a concern for you.These are not all the possible side effects of REZUROCK. Call your doctor for medical advice about side effects.Please see accompanying full Prescribing Information.You are encouraged to report side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088. You may also contact Kadmon Pharmaceuticals, LLC, at 1-877-377-7862 to report side effects.