What I Learned About Caring For Someone with Sickle Cell Disease
By Howard Woolley
When I was the closing speaker at the celebration of life for my wife Gail Campbell Woolley at a hotel, steps away from the White House, I said that through good times and bad I always wanted to be the same person she “selected” to be her life partner when we first met as students at Syracuse University. I went on to say that no matter what life brought to her via sickle cell disease she was always the same person I fell in love with and married.
I meant what I said and after 34 years of marriage during the last three years of her life when the collateral damage of this rare blood disease had taken its toll in the form of multiple orthopedic surgeries, an amputation, and pulmonary hypertension, I always made it a point to look past those things to the essence of who Gail was to me. One of the ironies of life is that in retrospect our first 31 of our 34 years together, even with the hospital visits and struggling to explain Gail’s disease to medical professionals in cities around the world along the way, I found that, in a comparative sense only, those were the easier years. The last three years proved to be the most difficult. During those years, Gail had to face the realization of pulmonary hypertension and a below-the-knee amputation. The impact this had and the limits it put on her quality of life and her indomitable spirit cannot be put into words.
As I reflect, I can share a few important things about being a care partner through all of our years together:
Enjoy life to its fullest. Everyone can define this for themselves in whatever way they wish. During the better times, and there were many, we enjoyed life to its fullest. And then, we learned to manage the harder times with grace the very best we could. In our case, Gail pushed us to travel the globe, meeting people from all walks of life, and taking part in activities that we could not have fully imagined.
Do the things that bring joy. Nothing is too small to bring a moment of contentment and joy. Life is about time and using that time to do the things you enjoy. Gail liked to write, read romance novels, tend to her plants and garden, and so much more. As she described in her memoir SOAR Gail could be blunt, direct, and to the point because, for her, time was of the essence.
As the caregiver/care partner do things that raise your spirits. It is helpful for a person with a rare disease and equally as important for their care partner/caregiver to take time for themselves. I had a sports weekend that I participated in for many years. During the last year of Gail’s life, I stayed by her side and was fully prepared to forego the weekend getaway. I learned that Gail had asked a family friend to stay with her so I could have that time with my friends to laugh, tell stories, and recharge.
Click here to learn more about Gail’s story, or read her memoir which is now available on Amazon.
Howard Woolley is a sickle cell disease philanthropist and advocate. He is a consultant to leading technology companies and a former telecommunications executive.
Latest from Know Rare
Discover the latest treatments for IgA Nephropathy (IgAN), a rare kidney disease. Learn how current medications and emerging therapies work to slow progression, reduce proteinuria, and protect kidney function.
Discover how patient education empowers individuals with rare diseases to better understand their diagnosis, make informed decisions, and actively participate in their treatment plans. Learn why clear, compassionate communication is key to improving outcomes in rare disease care.
A heartfelt mother’s account on five years of navigating pediatric specialist waiting rooms with her medically complex child.
A powerful personal journey through Koolen-de Vries syndrome, ADHD, and neurodivergent parenting. Discover how one mother turned diagnosis into empowerment, embracing difference, healing guilt, and raising resilient, remarkable children in a world that doesn’t always understand.
Toni Roberts lives with Epidermolysis Bullosa, a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering and tearing. Toni’s condition profoundly impacted her older sister, Cady Ward. Witnessing Toni’s daily struggles and challenges, Cady was inspired to become an advocate for rare disease and take on an extraordinary challenge—run an ultra-marathon.
Dr. David Fajgenbaum was in his third year of medical school when a rare and mysterious illness derailed his plans. Crushing fatigue, abdominal pain, and multiple swollen lymph nodes progressed rapidly, and he found himself in the ICU with multiple system organ failure. Recovering from the brink of death, he was diagnosed with Castleman disease (CD), a rare condition that at the time was thought to be a lymph node disease with similarities to cancer.
Learn about Dr. Rohit Aggarwal’s efforts in creating more centers of excellence for myositis, as well as educating, empowering, and connecting patients to clinical trials.
Recognizing the need for an effective way to treat becker muscular dystrophy, researchers have been studying the cause of muscle loss, and ways to stop it from happening.
After his diagnosis of limb-girdle muscular dystrophy type 2B at age 21, Chris initially opted for a safe career path, choosing jobs with steady income, benefits, and predictability. However, this decision made him feel like something was missing. Find out how Chris was finally able to follow his heart, finding purpose and contentment in becoming a writer.
Learn more about CureGRIN, founded in 2018 by parents of children diagnosed with GRIN Disorder to help find cures and therapies for people around the world suffering from these conditions.
Learn about the incredible story of Edward Gent, a Sports Nutritionist diagnosed with MMN, who decided to create an app to help others worldwide with their disease and symptom management.
Find out about 7 research areas identified as priorities in Sickle Cell Research and about a sickle cell disease drug, which was originally approved for treatment, that has been taken off the market.
It’s no secret that it is difficult to get to a pain medicine specialist. There are just so many people in pain who cannot find relief, and are looking for help. Learn about Bliss Health, which provides access to pain management services through virtual consultations, through a dedicated team of medical professionals who specialize in the diagnosis, treatment, and ongoing management of various types of chronic and acute pain conditions.
There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.
If you are coming across high copays and struggling to afford your treatment plan, here are a few options that may help you reduce the costs of your medications.
At age 15, Becca Salky became her own medical detective, playing a key role in uncovering her diagnosis. Now, as a Clinical Research Coordinator at Massachusetts General Hospital, she focuses on spreading awareness about MOG, finding better diagnostic tools, leading clinical trials, and fighting gender disparity.
On the “Rare Insights” podcast we bridge the gap between those living with rare diseases and the biopharmaceutical industry.
Why Men’s Health Week (June 10-16) matters for the Rare Community, and how you can take part.
June is Pride Month, and at Know Rare, we are committed to celebrating the rich diversity within the rare disease community.
Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.
When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.
This summer, NMOSD and MOGAD patients, caregivers, clinicians, nurses, researchers, and advocates are invited to join The Sumaira Foundation at Emory for TSF's Atlanta Patient Day.
Know Rare writer Gina DeMillo Wagner’s new memoir, Forces of Nature explores powerful themes related to caregiving and rare disease.
Journalist Lindsay Guentzel offers an inside look at life with the rare muscular condition.
This May, Know Rare is shining a light on myositis, a group of rare autoimmune muscle diseases that can have profound effects on daily life. This is an important time for the myositis community and the rare disease community at large: a time to share stories from those living with the condition, share more information about the current state and future of the disease, and advocate for better treatments that will ultimately enhance the quality of life for those impacted by it. Whether you're a patient, caregiver, or advocate, join us in raising awareness and supporting those affected by myositis.
Author Chris Anselmo explains why being mindful of your pace can have major benefits for your health and well-being, and offers some tips to help.
