7 PNH Resources to Help You Understand Your Illness
In 2016, when I was diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I didn’t know where to turn. I grappled with finding resources to understand my diagnosis better. Googling my illnesses was a scary place to turn, as it displayed an extreme version of my diagnosis and heightened my sense of worry. In addition, adding the word “rare” intensified the feeling of loneliness and left me wondering if I am the only individual on this planet diagnosed with these illnesses.
Resources not only helped me understand my diagnosis better, but also gave me the opportunity to meet other patients and gain a sense of peace by feeling less alone. Every patient and caregiver searches for answers to scary questions such as:
““Will this be my life forever?”
“What treatment options are available?”
“Who can give me further information to feel less alone?””
While I understand those terrifying feelings, being on this health journey for 15+ years, I have found resources to help me make it over each hump. When I was first diagnosed, my parents, who were my caregivers, searched high and low for any information to help us navigate this new “normal.” At the time, the National Organization for Rare Disorders (NORD) held an in-person rare disease conference specific to a patient's illness. The conferences allowed you to meet other patients and caregivers and gather information from NORD on how to make it through this phase of life.
I was in search of an aplastic anemia & PNH specialist who could help me treat both of my blood disorders. My parents and I didn’t know where to turn. We didn’t have much online information to go off, but this was an important step I needed to take. As I met other patients and spoke with them about their illnesses, I asked one patient who her doctor was. I explained to her that I was trying to find a specialist for my conditions.
Excited to help me, she wrote down a list of five doctors whom she had a second opinion with and recommended I do my research and speak to them. That is exactly what I did. With the help of my parents, we spoke to each doctor on the list, and from that list, I found my specialist who still treats me to this day.
Resources and patient-to-patient connections are a huge part of my story and have helped me get on the road to feeling better. As I share these resources below, I hope they help you understand your illness in greater detail and provide you with the push to make great connections with patients, caregivers, medical staff, or doctors who may help aid in your journey.
AA & MDS Foundation
This nonprofit provides PNH patients with resources and a road map to help manage symptoms, find a community, and offer financial support.
PNH News
PNH News provides information on PNH drugs, care, and patient-doctor perspectives. Many articles written help people understand what patients go through while also gathering information from doctors.
PNH Facebook groups
On Facebook, there are different private groups catered to giving patients a voice. Joining these groups gives patients and caregivers information from others who are in similar situations. It can help to feel less alone in your journey.
American Society of Hematology (ASH)
ASH is a society of clinicians and scientists who dedicate their time to advancing care for blood diseases. Data is provided from doctors and medical staff on treatment options and detailed information.
National Organization of Rare Disorders (NORD)
NORD provides research, financial support, and further tools on PNH. From my story mentioned earlier, NORD has been a big part of my story. They are a great resource to understand more and lead you to know more about PNH in detail.
My PNH Team
This website provides you with information to better understand PNH symptoms, diagnosis, and causes. Access to this group also helps expand the social network of patients and caregivers.
PNH Global Alliance
This nonprofit was created to bring the PNH community together on a global scale. The intent is to collaborate and support each other in fighting this rare disorder.
While everyone’s journey is different, and some of these may not be what you need right now, I hope you find something helpful or something that points you in the right direction. Whatever it may be, viewing these links may ignite something within you to keep moving forward, to push through the not-so-good days. Trust me, I know how hard that can feel.
About the Author:
Brandi Lewis is a blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder living in Alabama. She is passionate about helping others diagnosed with a chronic illness. She was diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. Her greatest accomplishment is saving three lives by having people register to become a bone marrow donor. Brandi currently sits on different boards to further expertise and information for blood disorder patients. She is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine. Learn more about her at www.brandilewis.com.
