This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria. (PNH) How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis. Taking a look back at how my journey started -- just having completed college and newly married -- the first thing I did after being diagnosed was to seek out the support of other patients.
I found help through the National Organization for Rare Disorders (NORD) who mailed me a list of about ten patients and utilizing postal mail, reached out to everyone on the list. It was obviously a really slow process by today’s standards and not many responses were received. Some years later, I found a small group of about five PNH patients on a Yahoo group chat site. I was truly inspired by a woman, Rebecca Gaskin, who started the chat group. Although she suffered severe abdominal pain every day, she had huge aspirations to bring patients together, sell T-shirts for the cause, and reach out to specialists to gain knowledge to pass along to others. Rebecca was a true trailblazer.
When Rebecca passed away from complications of PNH in July of 2003, I was deeply saddened and I felt had lost a true friend. She lived halfway across the country and although I had never met her in person, she left a significant impression on me. Like me, she was a young wife and mother of two small children. While I mourned the loss of my friend, I realized Rebecca’s work needed to continue.
My continuation of her work has led me to meet and connect with many people with PNH. I have enjoyed many friendships along my PNH journey that have benefitted me and inspired me to continue to help others. And those same people who I have been privileged to help, have helped me more than they will know because I’ve come to realize that this disease isn’t just a battle of the bone marrow, it’s an emotional and mental battle as well. For many years, I lived in a state of denial. It’s taken some wonderful friends to pull me out of that mental state and force me to face PNH head on.
For the past six years, I was given the opportunity to serve on the PNH Research and Support Foundation where I have been able to assist many patients in being able to visit a specialist through its grant program, and I have had the privilege of speaking to patients and caregivers at NORD conferences around the country. The PNH Foundation’s recent efforts formed a strategic alliance with AAMDSIF, and I am now honored to be able to serve on its Board as well. I continue to work with the PNH Foundation by serving as the Chair of its Committee and hope to inspire others to keep the spirit of support and awareness alive.