Skip to main content

Worried for Puerto Rico

Living with a rare and chronic illness is never easy, but try doing it in the face of an epic natural disaster – no water, no power, no fuel – forget easy access to medical care, medical equipment or medications.

My family connection to Puerto Rico is distant. My great grandfather was from the northwest part of the island. He came to the mainland United States to go to college, and eventually became a professor at the University of Oklahoma. He was a linguist. While I inherited an HPS gene from him, sadly I didn’t get the language gene.

Living in Europe, I learned a lot about the history and culture of the other aspects of my heritage, but I never knew much about Puerto Rico. My grandmother would tell us stories about visiting the family plantation when she was a child, but that was about all I knew of the place.

When I was diagnosed with HPS, one of the blessings (instead of curses) that came with the diagnosis was a sudden intimate connection to the island. Suddenly I knew tons of people from Puerto Rico, and they were more than casual acquaintances – they became family! I was also blessed to get to visit the island several times to attend HPS conferences and work on HPS outreach. That was interesting, but it was also very satisfying to travel through parts of the island I knew my great grandfather and his family must have known. It was a connection to learn more about the culture and the food and the feel of the place.

My family here lost connection with the extended family in Puerto Rico when my grandmother’s last cousin (that she kept in touch with for years and years) finally passed away. I’ve always wanted to find extended family there, and make sure they knew about HPS, but I’ve never been able to do it. Every time I’ve attended an HPS event in Puerto Rico, I look at the crowd and wonder what the odds are that someone there is related to me, albeit distantly.

Unlike my many, many, Puerto Rican friends, I am not waiting to hear about the welfare of a relative. Still, waiting for news and watching for updates has had me very anxious this past week.

I worry for anyone in Puerto Rico who might have HPS and be on oxygen. Their oxygen concentrators won’t be working and I have no idea how they will get fresh oxygen tanks delivered anytime soon! I worry about whether anyone with HPS has been injured and may be bleeding and need medical attention. I worry about the health implications for anyone with HPS going forward as the island tries to recover. Are their lungs being exposed to mildew or mold that could affect their long-term prognosis? Are they out in the sun and unable to get the sunscreen that could prevent skin cancers? Are they getting exposed to bacteria in flood waters that could make them sick and further complicate their medical lives?

On the news I’ve heard about people unable to get kidney dialysis or insulin. When you have a chronic health issue, you are so vulnerable when things go wrong. It is scary!

I’ve felt so frustrated by the scant attention given to the plight of Puerto Rico in the media. I know the challenges of a natural disaster on an island are different than those in an area on the mainland. People can’t load up their cars and drive there to bring supplies etc. Still, I can’t help but feel that if this were happening elsewhere in the US, more would be done faster. It is sad that every news story has to emphasize that Puerto Ricans are American citizens. I guess I’m glad they are making the point, but it says something that they have to make it at all. Puerto Rico has the highest per capita participation rate in the Armed Forces. They have fought and died for the US for generations, yet according to surveys, more than half of Americans don’t even know Puerto Ricans are citizens.

I can’t imagine how all this must frustrate my friends with closer ties to the island.

For now, we are trying to figure out what we can do to help those with HPS recover. What needs might they have that are unique, and what is the most effective way to help?


Popular posts from this blog

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Just waiting: A continuation of my transplant story…

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.

To be honest, I don’t remember much about the time I spent in the hospital before my transplant. I’m not sure if that’s because it was pretty boring and routine, so there’s just not much to say – or if it is some kind of self-preservation maneuver my brain has done to shield me somehow.

After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentalizing…

Family hunting

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. C…