Myelodysplastic Syndromes: Five Individuals Share Their Inspiring Journeys

Five courageous individuals affected by myelodysplastic syndromes (MDS), whether currently managing the condition or thriving in survivorship, share their unique experiences with this serious and often misunderstood blood disorder.

Myelodysplastic syndromes (MDS) represent a diverse group of blood cancers where immature bone marrow cells fail to mature into healthy blood cells. Initially identified in the 1950s as “pre-leukemic conditions,” MDS was officially classified as distinct disorders in 1982.

While the exact cause of MDS is frequently unknown, higher risks are observed in individuals who have undergone radiation or chemotherapy for other diseases like cancers or autoimmune disorders. Exposure to environmental toxins may also contribute to the development of MDS.

MDS is relatively rare. The American Cancer Society estimates that over 10,000 new cases are diagnosed annually in the United States, though some data suggest even higher numbers.

The course of MDS varies widely: some patients remain stable with minimal symptoms for years, while others face rapid progression to life-threatening complications. Many fall somewhere along this spectrum.

Currently, a stem cell transplant offers the only potential cure for MDS, but most patients are not eligible for this treatment. Management strategies include blood transfusions and drug therapies. Patients classified as “low risk” often follow a “watch and wait” approach with regular monitoring.

Healthline interviewed five individuals living with or surviving MDS, providing insight into the diverse medical journeys and personal resilience associated with this condition.

Note: The following interviews have been edited for clarity and brevity.

What is something you wish you had known before your MDS diagnosis?

Richard Kimball: Before my diagnosis, I often wondered why I was so prone to viral infections or why minor injuries led to unusual bleeding. I also noticed a sudden loss of stamina and endurance. Receiving the diagnosis was oddly a relief because it helped me piece together these symptoms.

I was inspired by Suleika Jaouad’s memoir, Between Two Kingdoms, where she quotes Susan Sontag: “Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.” I wish I had fully grasped this sooner—that health can be fragile and transient.

Jeff Soucy: I had no symptoms, so the diagnosis was a shock. I initially thought I was in a pre-cancerous state since I only associated blood cancer with leukemia. The term “cancer” wasn’t clearly communicated, so I had to research it myself to understand.

Now, I strongly advocate for routine blood testing because early detection made a huge difference in my case.

Jill Dolgin: As a healthcare professional, I was aware that chemotherapy for breast cancer could potentially lead to MDS, though it’s rare. Knowing this didn’t change how I handled my breast cancer treatment decades ago. However, I wish I had researched MDS more before undergoing my bone marrow biopsy.

Ross Bagully: When diagnosed, I didn’t realize how much information and support was available through organizations like the MDS Foundation, Leukemia & Lymphoma Society (LLS), and the Aplastic Anemia and MDS International Foundation (AAMDSIF). These groups offer invaluable guidance and support.

Junia Papas: I wish I had lived my life even more fully before diagnosis and been kinder to myself. No one expects to receive such a diagnosis, especially younger people. Now, as someone living with MDS, I understand the importance of embracing life and self-compassion.

What is one thing you want others to understand about MDS?

Richard Kimball: Understanding prognosis and the science behind MDS is challenging. Doctors use the IPSS-R scoring system to estimate life expectancy, but it’s important not to overinterpret these predictions. The disease’s complexity requires ongoing research and patience.

Junia Papas: Many people assume that having blood cancer means immediate treatment. When I explain I’m on “watch and wait,” they often think something is wrong with my care. Awareness that blood cancers vary greatly and require different approaches is crucial.

Jeff Soucy: Although I’m cured, the mental health impact is lifelong. Physical recovery doesn’t guarantee emotional healing. It’s important to recognize the invisible trauma that accompanies a blood cancer diagnosis.

Jill Dolgin: MDS affects individuals differently depending on the blood cell lines involved. People might look healthy but still experience profound fatigue and limitations. The “watch and wait” approach can feel like “watch and worry,” reminding us of life’s fragility.

Ross Bagully: MDS’s impact varies widely. Many suffer from extreme fatigue, while others, like me, have milder symptoms. Greater awareness among both medical professionals and the public is needed to appreciate the disease’s seriousness.

Junia Papas: Fatigue is a significant and often invisible symptom. Using a wheelchair or declining certain activities can lead to misunderstandings and judgment. Compassion and education about MDS are essential.

What is one simple way people without MDS can support those living with it?

Richard Kimball: Registering as a bone marrow donor through programs like the National Marrow Donor Program is straightforward and can save lives.

Jeff Soucy: Becoming a donor is the greatest gift. Also, instead of saying, “Let me know if you need anything,” actively ask how you can help. Small, thoughtful gestures—like surprising someone with snacks—can mean a lot.

Jill Dolgin: Researching trustworthy resources about MDS treatments and care options can empower friends and family to provide meaningful support. It’s also important to respect where someone is emotionally in their journey.

Ross Bagully: Many underestimate MDS’s severity. Encouraging broader knowledge, even among healthcare providers, helps ensure patients receive the care and respect they deserve.

Junia Papas: Show compassion and patience, especially when cognitive symptoms like memory lapses occur. Understand that these changes are due to the illness, not the person.

Who are your strongest advocates?

Richard Kimball: My wife Mary Lou, my sisters, close friends, and organizations like the MDS Foundation have been pillars of support. Healthcare workers, though often behind the scenes, provide invaluable kindness during treatments like blood donations.

Jeff Soucy: Friends who encouraged me to accept help despite my independent nature were crucial. My doctors reinforced that rest is vital for healing, changing how I viewed recovery.

Jill Dolgin: Professional connections, including oncology nurses and social workers, were instrumental. The MDS Foundation’s Executive Director personally guided me through understanding my diagnosis.

Ross Bagully: My family is my foundation, but ultimately, I believe in taking personal responsibility for my health and staying informed.

Junia Papas: My husband is my advocate, especially when fatigue hinders my self-advocacy. Professional groups like the MDS Foundation also play a key role in raising awareness.

How do you practice self-care?

Richard Kimball: I find peace in nature—tending my forest and daily walks with my wife. Staying informed about MDS research empowers me and gives me a sense of control.

Jeff Soucy: Setting boundaries and embracing gentle physical activities like yoga and Pilates support both my mental and physical health. Creative expression and therapy help me process the emotional impact.

Jill Dolgin: I prioritize patience with my physical and emotional limits, allowing myself rest and exercise as needed without pressure.

Ross Bagully: Regular daily walks with my wife, a balanced diet rich in fruits, vegetables, fish, and poultry, contribute to my well-being.

Junia Papas: Spending time in nature, whether walking in the forest or sitting quietly in my backyard, provides profound comfort and rejuvenation.

Any final thoughts you’d like to share?

Richard Kimball: I created a journaling group called Farther On, which helps me reflect on life’s blessings despite MDS. Writing is a therapeutic way to make sense of this journey.

Jeff Soucy: Donating blood is a simple yet powerful way to help others. It complements bone marrow donation and supports patients in need.

Jill Dolgin: Open communication with loved ones is vital. Sharing your experience allows them to support you effectively if your condition changes.

Ross Bagully: While a diagnosis can be frightening, knowledge and proactive care provide hope. After 10 years without treatment, I lead an active, fulfilling life.

Junia Papas: You are not alone, and hope remains strong. Together, through awareness and community, we can drive progress toward better treatments and outcomes.

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