Attending the IPPF (International Pemphigus Pemphigoid Foundation) conference in Durham NC a few weeks back I became more ‘just human’ than I was before. I met and interviewed a lot of interesting people. Some were doctors, others were industry professionals, and the most interesting…other people who have varying kinds of Pemphigus and Pemphigoid including an ER doctor who has PV!
Every age group was represented from a 20 year old who had a feeding tube for many months and documented his PV journey on YouTube – to elderly people I wasn’t bold enough to ask their age of. There was this beautiful India Indian woman, and a stunning African American woman who bewildered me with her shoes (she rocks heals) to a middle aged musician who prayed to die, and a man who has lost all of his hair. There were people of all different faith traditions, cultural backgrounds, education levels, and we all had something in common…a rare autoimmune disease that has changed our lives and how we live them.
I became more human because this disease equalizes everyone. We almost all had the same story of misdiagnoses, medical runarounds, fear of the medication, and lack of understanding how or why we were struck with this. People have lost their vision, their balance, their careers, their spouses, their financial stability, and some feel that they’ve lost their sanity. I think that we all search for the reason why or how we triggered it, but many of us have just decided that ‘why’ is no longer the important question, because how to remain in remission, if we are there, becomes the prominent query.
I’m three years into this journey. If I’m honest…I still feel like I’m living on borrowed time – to be more candid…I still feel like I’m dying. I’m no longer in remission and am in the process of getting Rituximab infusions approved and scheduled hopefully for the week of Christmas and then just after New Years. I guess it’s a weird gift to me. I’m back on what I call the ‘Prednisone Rollercoaster’ as it makes me highly emotional and stimulates my brain to race with words as if I could write an entire book in one night.
My world got significantly smaller when I returned from the conference and a young man (26) private messaged me from Saudi Arabia with a whole list of questions as he felt that I might be able to explain things easier than what his doctors had. I took information I learned from Dr. Grant Anhalt (who was actually the first doctor to try Rituximab to save a young woman whose PV was so unmanageable they were having a hard time keeping her alive and it worked!) I explained what our bodies are doing and why listening to an ‘Internet Doctor’ promoting a particular diet could actually be harming him instead of helping. I connected him with the IPPF and my doctor here in Buffalo who has helped him find a better doctor in Saudi Arabia. I’ve become friends with people all over the world and our common thread…being sick with a rare disease that dates back to ancient times described in the book of Job. My first international friend was a then 17 year old boy in Kathmandu – yep…the one in Nepal! Then inspiration to learn how to box came from a man in El Salvador and this list can just go on and on.
I became more human.
This week hosted Election Day here in America. I no longer look at politics as the crazy corrupt system that it is, but my personal role in it as an American. I see that my reality as someone with a rare disease means that I can’t just ignore what the politicians are doing. I need to understand how they vote especially when it comes to health care and the NIH (National Institute of Health.) I need to know what they think about immigration and international politics because nationalism in 2018 is outdated and overrated. We need to realize that we are a human community that can and should be able to learn from and work with one another for the benefit of all humans.
That the research being done here in the states and in Germany and in New Zealand and many other places all over the world impact all of us. That just in order for me to get diagnosed correctly it took 7 doctors and in the course of treatment I’ve had amazing doctors from India, Germany, Canada, China and Ecuador. Because when we really break it down…DNA has no politics and has no learned racism.