Last year was shaping up to be a very important year. I had just gotten an associate degree in journalism and was all set to transfer to a four-year university in the fall to pursue my B.A. On top of that, I turned 21 in February and was looking forward to savoring all the exciting things young adulthood had to offer. It was during this very same month that everything changed.
Pemphigoid Gestationis is a rare autoimmune blistering skin disorder that affects an estimated 1 in 40,000-50,000 pregnancies in the United States each year. United Kingdom figures put it at 1 in 1-2 million people. You could say that each of us is one in a million! No one wants this; most have said that they wouldn’t wish it on their worst enemy. This is my PG story.
The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.
For pemphigus and pemphigoid patients, there are several events that can trigger stress and exacerbate disease activity, even simply being diagnosed with a rare disease. The time it takes to be diagnosed, the medication itself, and how it all affects our families and friends can trigger stress and depression.
You have heard this message time and time again: It’s important for family caregivers to take care of their own health so they can stay strong enough to take care of their loved ones! But as a family caregiver, it’s difficult to find the time because caregiving takes so much work and energy. Being a family caregiver can be like having another full-time job.
If you cannot work enough to earn the SSA’s monthly Substantial Gainful Activity (SGA) limit of $1,130, then you may be eligible for Social Security Disability Insurance (SSDI). Generally, you need to have worked five of the last ten years in a job that pays into Social Security, and additional years depending on your age.
It’s no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It’s also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.
Pemphigus and pemphigoid are very patient-specific diseases. Everyone’s disease activity varies. Well, the same thing goes for diet and these diseases. The foods that negatively affect one person’s disease activity may do nothing to another individual. It is about becoming an expert on you.