Back in October, the International Pemphigus & Pemphigoid Foundation (IPPF) took another step in their plan to learn from and work with patients to increase awareness for pemphigus. They held a Patient Forum as part of the larger 2020 IPPF Virtual Patient Education Conference: “Creating a Brighter Future Together.” Patients were able to bring attention to the issues they find most pressing within the pemphigus community.
Pemphigus is a chronic condition that is characterized by sores and blisters on the skin and mucous membranes. There are two forms of this condition: vulgaris and foliaceus. The former sees blisters form in the mouth, followed by blisters in the mucous membranes of the genitals. While they are often painful, these blisters do not itch. Pemphigus foliaceus is characterized by blisters on the shoulders, chest, and back that itch but are not typically painful. Regardless of type, these blisters have the potential to burst, which can lead to infection. In some cases, sores in the mouth make eating too painful, leading to malnutrition.
Pemphigus is an autoimmune condition, meaning the immune system mistakenly attacks its own body. Antibodies damage the skin and mucous membranes. In most cases, doctors do not know what triggers pemphigus, but in rare instances the cause can be identified as angiotensin-converting enzyme inhibitors, penicillamine, or other drugs. Regardless of cause, a dermatologist will treat a case of pemphigus. They can prescribe medications like corticosteroids that stop the blisters from forming, but it often takes years to regulate treatment and successfully stop the symptoms of the disorder.
Patient Calls to Action
Throughout the world, 541 people registered and saw the event, whether they attended live or watched the recording afterward. They all saw how speakers were able to come to a conclusion about the most pressing needs facing the pemphigus community. They identified these needs as:
- Curating and developing better treatment options
- Making diagnoses faster and more accurate
- Increasing access to current and future treatments and making care more affordable
Once they identified these issues, they listed a number of calls to action to fix them. According to the panelists and speakers, we have to make treatment more affordable and accessible, raise awareness for pemphigus and the journey of patients within audiences like lawmakers and leaders, and raise awareness about clinical trials so that more patients participate and more research can be conducted.
You can find more on this forum here.