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Navigating AHP and Pain During a Pandemic
September 14, 2020
Alnylam Pharmaceuticals
September marks Pain Awareness Month, an opportunity to recognize the 50 million Americans who suffer from chronic pain, including those living with acute hepatic porphyria (AHP)—a rare disease with painful symptoms.
As the COVID-19 pandemic continues to have a significant impact on people and communities around the world, it poses unique challenges for people living with AHP—both for those who are seeking a diagnosis, and those who are diagnosed and managing the condition. We spoke with Danielle Nance, M.D., hematologist at Banner MD Anderson Cancer Center (Phoenix, AZ), who explained what she sees her patients experiencing and offered tips and resources for patients with AHP and their caregivers during these challenging times.
The following was adapted from an Alnylam-sponsored presentation about living healthfully with AHP. It is for informational purposes only and should not take the place of a discussion with your doctor:
What is AHP, and what makes it a challenging condition for people to manage under normal circumstances?
Dr. Nance: AHP refers to a family of rare, genetic diseases characterized by potentially life-threatening acute attacks and, for some patients, chronic pain and other debilitating symptoms that negatively impact daily functioning and quality of life.
It’s important to note that AHP affects people differently, and symptoms can vary from person to person and change over time. While severe, unexplained abdominal pain is the most common symptom of AHP, patients may also experience nausea, weakness and fatigue, among other symptoms. In fact, in a large natural history study of patients with recurrent AHP attacks, 65% of patients reported experiencing chronic symptoms, including pain. Not only are the painful symptoms associated with AHP disruptive to a patient’s life, but they can also be incorrectly attributed to more common conditions, leading to years of misdiagnosis and delays in appropriate care.
How have these challenges been amplified during the COVID-19 pandemic?
Dr. Nance: COVID-19 has presented very real obstacles, including disruptions to care and treatment, new stressors (which can trigger and/or exacerbate AHP attacks) and an overall impact on emotional health and well-being.
For people who are experiencing unexplained, chronic pain, the journey to receiving an accurate diagnosis may take even longer as in-person healthcare visits, checkups and non-critical care are delayed. These potential delays in diagnosing AHP and receiving appropriate care can be dangerous and potentially increase the risk of long-term or permanent neurologic damage.
Along with the physical symptoms, having AHP can be emotionally and mentally stressful and cause some people to fall into a cycle of negativity from everything they are going through. COVID-19 has introduced additional stressors in people’s lives, increasing the likelihood of AHP attacks in some people. Depression, and particularly anxiety, is also common in people with AHP as they struggle with feelings of isolation, which can be even more profound when factoring in social distancing.
Dr. Danielle NanceAre there steps or tips people with AHP can follow to help with their pain and ensure they are getting the care they need at this time?
Dr. Nance: Yes, while the pain of AHP may not go away completely, there are some steps that can help people with AHP live their lives more on their terms.
- Be proactive: Track signs and symptoms in a daily journal or app to have a greater understanding of the disease and help recognize the potential warning signs and symptoms of an AHP attack. Be aware that some drugs in certain medication classes may trigger AHP attacks, so always talk to your doctor before making changes to medications. Also, it’s important to monitor and keep track of AHP triggers and seek medical attention when needed.
- Practice healthy behaviors: Certain healthy behaviors can help make a difference in reducing pain and avoiding triggers, such as avoiding alcohol consumption and smoking, engaging in regular exercise, practicing healthy eating habits, socializing with others and implementing a stress management plan. Multiple studies have shown that reducing stress and relaxation techniques can improve overall health and well-being, and may even reduce pain or improve the perception of pain.
- Enlist your care team: When it comes to building a healthcare team, it’s important to feel comfortable and have trust in each member, and to tailor your healthcare team to your needs. Talking with family and friends is also important, as a strong social support network can be critical while navigating stressful situations.
- Seek medical care when needed: Seek timely treatment of systemic illness or infection. Make and keep regularly scheduled appointments with your healthcare team, and take advantage of Telemedicine when appropriate. People should talk to their healthcare providers and explore their insurance plans to understand which remote care options are available to them.
What are some resources available to help people with AHP?
Dr. Nance: People should talk to their doctor or can visit PinpointAHP.com for additional information and resources related to AHP, including a doctor discussion guide, which can be useful for having a meaningful conversation about AHP. The American Porphyria Foundation also has helpful resources available at PorphyriaFoundation.org to improve the health and well-being of those impacted by AHP.
