Photo of HPS'ers from last year, from left to right: Maria G (she is very sick right now with pulmonary fiborsis), Carmen C., Emilio, Rebecca (had a successful lung transplant more than a year ago) and Maria M (passed away a year ago today.)
Today is a sad anniversary. It was a year ago today that our friend Maria M. passed away from complications of Hermansky-Pudlak Syndrome. She needed both new lungs and a new kidney. They never came in time.
Right now is a very difficult time for the HPS community. Sadly, we just lost one of our young adults, and we have several other HPS’ers who are quite ill. It’s hard during times like these to keep pressing ahead. It’s hard not to be swallowed up in sadness and grief.
I keep trying to tell myself, however, that for me, the best thing I can do to honor the memory of the friends I’ve lost with HPS is not to let their memories be forgotten. The best way to do that is to work on the goal we all had and have in common – to find the cure.
When you are this emotionally raw though, it’s hard not to over react to things. It’s hard not to take things personally that aren’t meant personally.
Yesterday I saw someone on Facebook posting about albinism. They said that albinism is not a health issue. I almost posted back, but I stopped because I recognize that right now, I’m not 100 percent rational about the topic. When you’re watching your friends die of their particular type of albinism, it sure does seem like a medical issue. When you see all the time the bad things that can happen with people with HPS do not have a diagnosis, it’s very hard to not feel that such an outlook is even dangerous. Even for those with albinism that don’t have HPS; people with albinism are at increased risk for skin cancer, definitely a medical issue. Prevention can make such a difference for skin cancer, but not if you don’t recognize the issue. Yet, I didn’t want to get into the conversation just now. I’m afraid my emotions will get in the way of the message I want to convey.
Still, most people with albinism don’t have HPS. It’s sometimes hard for us to reconcile these very different perspectives on living with albinism (yes, those of us with HPS ALL HAVE ALBINISM – but not everyone with albinism has HPS.) We are not as rare as everyone once thought. Our numbers grow every day with better diagnosis.
Even on this blog, I am sometimes of two minds about how much to share and what to write. On the one hand, I want the world to know what it’s like living with HPS. I want people to know and understand what we go through, and to understand why we need their help. On the other hand, I worry about the new person that stumbles across this blog. I worry about the person who might be so afraid if I really expressed everything happening in my world that they’d be afraid to seek testing or to find out what to do to best care for themselves. After all, not only does not everyone with albinism have HPS, but there are different types of HPS, and not all of them are as bad as others.
What’s the middle ground?
Right now, I’m grieving. Right now, I’m praying almost minute to minute for my friend Elsie to get her new lungs. Right now, I’m avoiding some of the bigger picture thoughts, and at the same time, trying to contain what I really want to shout from the rooftops.
So, here’s a little shout, even if it is too quiet.
We, the Hermansky-Pudlak Syndrome community need your help! We need to find better treatments, and someday, a cure.
We need the greater albinism community (and the pulmonary fibrosis community) around the world to try to understand us, and to help us. We are people with albinism too. We are people with pulmonary fibrosis too. We are among you all over the world. Getting an accurate diagnosis isn’t a cure, but it can prevent unnecessary problems and it can help those affected maximize what is available to help.
So, in memory of those who have gone before us like our good friend Maria; in memory of those who gave so much to us through their participation in research and through their friendship; in memory of those who can no longer speak up – we need to find better treatments. We need a cure. We can’t do it alone.