Finding Purpose Beyond Diagnosis: Suzanne’s Story with Alpha-1
For nearly four decades, Suzanne Trapani has been caring for others as a registered nurse. However, life began to demand that she turn that care inward. After being diagnosed with Alpha 1 Antitrypsin Deficiency in 2012, and then Eosinophilic Asthma in 2023, Suzanne had to step away from direct patient care to endure the highs and lows of multiple respiratory illnesses. With help from Accessia Health, she is here to tell her story of finding purpose in everyday activities without worrying about how she will cover her next prescription refill.
What is Alpha 1 Antitrypsin Deficiency?
Alpha-1 Antitrypsin Deficiency (AATD) is a genetic condition that can cause damage to the lungs and/or the liver. There is no cure for Alpha-1, but some symptoms can be managed with treatments such as augmentation therapy and certain medications for Chronic Obstructive Pulmonary Disease (COPD).
“I’ve had respiratory illnesses my whole life,” Suzanne said. “[I was diagnosed when] a doctor who knew me wondered why my liver enzymes on blood tests were high. I saw two specialists who didn’t want to believe the test results because I ‘looked good’ and was ‘too high functioning’. Little did they know, that’s just my personality.”
Looking back, Suzanne can’t recall a time when she didn’t experience respiratory distress. And yet, despite this lifelong struggle, getting the diagnosis of both Alpha-1 and Eosinophilic Asthma was a lot to comprehend.
“I think I had [AATD] as an infant because it’s a genetic disorder. [But as I got older], my energy levels were decreasing, and I was getting more frequent respiratory illnesses [before the discovery of] Eosinophilic Asthma in 2023. The impact on my daily life has been huge. I had to stop working full-time around sick patients, which took a toll on me financially.”
Barriers To Care with a Chronic Disease
Not only did Suzanne have to change her lifestyle at the drop of a hat, but it soon became clear that explaining her condition and symptoms to healthcare professionals wouldn’t always be easy.
“Unfortunately, women are often dismissed when you tell a physician about extreme exhaustion. I have had to ‘fire’ doctors because their attitude towards me felt dismissive, and insurance companies have denied prescriptions that they [approved] the year before because a doctor would say I no longer qualify for the medication.”
Over 90% of those with AATD are undiagnosed or misdiagnosed, often due to lack of provider awareness and inconsistent screening practices. Lack of familiarity with AATD treatments among providers and insufficient education modules are major obstacles; with provider confidence in diagnosing AATD increasing from 7.7% to 19.4% only after educational intervention.
“[A stigma I’ve faced is that] I must be [lazy] or just want attention for being ill,” Suzanne said. “Actually, I am the opposite! I take very good care of myself.”
Drug approval and coverage for therapies are slow and costly processes, leaving patients with limited treatment options and delays.
“I’ve learned to be as educated—if not more—about my illnesses than my specialists, so that I could have more of a partner[ed] relationship with my healthcare team.”
Finding A New Normal Through Advocacy
Taking a step back from doing what she loved was initially hard on Suzanne. After going through a period of grief over what was lost physically and emotionally, she stepped back up to the plate and got involved with support systems for individuals with AATD and other chronic illnesses.
“I belong to organizations like the Alpha 1 Foundation, the American Partnership for Eosinophilic (APFED) for my asthma, and The Sjögren’s Foundation, for my [diagnosis of] Sjögren’s Disease. I’m [also a part of] some online forum groups and find it helpful to ask advice from fellow members who are also living with a chronic illness.”
Outside of being a fierce chronic disease advocate, Suzanne prides herself on being also being involved with a number of cultural organizations including the American Legion, a local police volunteer group, and a small group at her church.
“I [love] being involved where I can, like volunteering. It’s so good for a chronically ill person to get out and do stuff that forces you to not think about [your illness.] Suzanne said. “Honestly, most people don’t know much about my conditions. To most, I look healthy. However, what does someone with a chronic illness really look like? They don’t see me on the days—or weeks—when I have a simple respiratory virus [that] leaves me homebound.”
Pushing Forward with Accessia Health
After receiving financial assistance from another organization, Suzanne’s case was referred to Accessia Health’s Alpha-1 Antitrypsin Deficiency patient program. Thanks to the coverage she receives for her medical insurance and prescription copays, she can continue focusing on her work in the community without the financial burden that can come with AATD treatment.
“I purchase my own medical insurance through the marketplace, and the financial assistance has been such a blessing—it means I don’t have to choose between groceries and prescriptions.”
Suzanne also previously served as a member of Accessia Health’s Patient Advocacy Committee .
“I was a Registered Nurse, Volunteer, and Patient Advocate with [Accessia Health] because I wanted to give back and help [to say] ‘thank you’ for the assistance I received.”
A Lesson in Gratitude
Thinking back to what has helped her the most during her healthcare journey, Suzanne reflects on a book that encouraged her to enjoy the little things – no matter what trials and tribulations her disease may bring.
“I bought a book years ago called ‘Attitudes of Gratitude’ and began writing down the good things that happened each day. Now, even on a rough day, I can see the blessings in the fact that I have my dogs snuggling with me, and maybe a nice pot of homemade soup in the fridge.”
Resources for Those with Alpha-1 Antitrypsin Deficiency
If you or some you know has been diagnosed with AATD, there are resources available to help.
- Accessia Health’s Alpha-1 Antitrypsin Deficiency Patient Program – Patients eligible to enroll in the Alpha-1 program may utilize their assistance to pay for one or more of the following: medication and provider copays, coinsurance, health insurance premiums, medical expenses, and travel. Learn more and check your eligibility today.