And I heard many similar stories throughout the years.
Because this is a rare disease, finding information and support is often difficult. Back in 1995, finding any information on pemphigus/pemphigoid was next to impossible. You had only your doctor to rely on to know the answers and often the doctors didn’t even know. Since the advent of the Internet, there is a lot of information but it can be confusing as to what information is the information you need. This is why the IPPF is so important. Besides giving patients correct information, it provides help understanding the pertinent information; it provides emotional support; and it provides comfort – all of it from staff and many wonderful caring volunteers. Volunteers are a big the reason why the IPPF is still going strong after so many years.
Many of us have been in remission a long time – no disease and no drugs (or maybe just a small dose). We go about our daily business not wanting to think about PV, BP, MMP, or whichever of the diseases we’ve learned to live with. But there are many souls out there who are newly diagnosed or are going to be diagnosed, or are dealing with many issues associated with the diseases even years after diagnosis. We can help. We can give people the support they need by volunteering for the IPPF. It is important for the IPPF and for the patients to be able to connect with those of us who have “been there, done that!” Staying connected both to the IPPF and the clients can be so beneficial and mean so much to so many.
We have an unusual perspective – we’ve been where they are. We know what works and what doesn’t. Even if we are all different and our level of disease activity is so different, there are many experiences that we all have in common. Those of us in remission can be a Godsend to people in your area who need your help. With so few of us around, everyone can provide some level of expertise that will help someone get through a bad day, or a scary day, or a “hey, I had a great day today!”
One thing I’ve noticed about helping others, it helped me too. Even though I’m off all drugs, I still get an oral lesion from time to time. I think most of us in remission probably do. For a moment, maybe I worry if the PV is coming back, but I still go about my business for the day and put it out of my mind. But it always seems to be in the back of mind anyway. When I’m helping others, the last thing I think about is my PV. For some reason helping someone else deal helps me put it all in perspective.
I know that not everyone can be a volunteer … but we all can support the IPPF in one way or another. It’s an important organization for all of us whether we are in remission, have a small amount of activity, have a relative or a friend with one of the blistering diseases, or just want to make sure that no one has to suffer alone with pemphigus or pemphigoid.
The IPPF is important for all of us. Volunteer if you can. Donate when you can. We need to make sure the IPPF is here for all of us today, tomorrow and in the future until we have a cure.