Don’t Forget About the Adults


I am laying down thinking to myself why? So many whys to ask about. Why do I have a rare disease that nobody can treat? Why am I in so much pain every day? Why is the rare disease community still not being respected? Why don’t 30 million Americans count? And why are the 50 percent of rare disease patients that are adults hardly ever talked about?

I am not diminishing the 50 percent of the children who have rare diseases. I also understand it hits the heartstrings of people when you talk about children.

But let me tell you from an adult perspective of having a rare disease called Sarcoidosis.

I was laying down today watching the Today Show and saw a great clip by Richard Engel about how the tax reform cuts will affect the rare disease community, especially the children. I wanted to thank Peter Saltonstall, President/CEO from NORD and Emil Kakkis, Chief Executive Officer, Ultragenyx Pharmaceutical Inc. for expressing their opinions and supporting the rare disease community.

I cried watching that clip on the Today Show. There were many thoughts going through my mind. I watched and felt the pain of those children and also the parents.

Then came the other reason I was crying. I looked at that piece and so many others like that and they all have one thing in common.  They show no adults dealing with rare diseases. Why is that?

I was crying because I lay there in pain that I wouldn’t wish on my worst enemy. I lay there because if I move too much I may pass out. I lay there because my pain on a scale of 1 to 10 is at a level of 8 to 9. I also lay there knowing that being a realist that I will never see a cure in my lifetime,  yet I still fight for the rare disease community to possibly make things better for someone else.

Adults with a rare disease are a different breed. Most of us were living a normal life, then all of a sudden our lives changed in an instant. We didn’t ask for this. People think we are lazy, looking for attention, or just making things up. We try to work if we can, but often we have no choice because we can’t get disability. Even if we do get disability, it’s not enough to live on. 

We also have the pressures of trying to construct and maintain a support system, finding someone who will support us mentally, and sometimes even physically and financially.

That has been the hardest thing for me. I want to work. I can’t work. I went from being a runner to someone who has undergone nine surgeries in seven years. I want to be able to support my family, but I can’t. I have an amazing wife who deals with the everyday pressures of being the bread winner while also being a Mom. Worse yet, she wonders every day what is going to happen to me. People don’t realize that being an adult with a rare disease places great pressure on your significant other, as well as your child. I can’t do things a normal dad and husband can do. I try my best, but the reality is that I wouldn’t be here if it wasn’t for my wife and my daughter and I will never be able to do what other fathers do.

I also live with the reality that I it is likely I will not see a cure in my lifetime.

Does anyone who is not a patient understand that? I know my heath is not going to get better, and most likely it will get worse. I know that sounds terrible to say, but it is a fact. Imagine knowing that the pain I feel today will never go away. Imagine being old enough to realize, this but too young to die. I never know how I am going to be on any given day.

Imagine waking up to a phone call from your cardiologist saying “I called an ambulance for you. Your heart stopped twice while you were sleeping.” Imagine waking up on the floor not knowing how you got there. That is my life, every day.

So here I am laying down wondering why don’t people talk about adults with Rare Diseases? I get upset hearing, “You lived your life.” When is 50 a whole life? I am grateful that I have made it to 50, but to say that I lived a full life is one of the most insensitive things I have ever heard.

I understand that people will look at children and feel bad. Without diminishing the plight of children with rare diseases, I ask people to remember that the other 50 percent of people with rare conditions are young adults and adults. We deserve respect just as much as anyone else. We suffer too. Our families suffer too.  We have to make dramatic life changes just to stay alive. We live day-to-day too.

When I see something about Rare Disease patients, why can’t we get a point of view from both adults and children? Is that really too much to ask?

As I write this I am crying. I am a man who cries, and I’m not afraid to say it. I know that I might upset members of the rare disease community, but I want people to realize that there is another side to this community. Please don’t forget about the adults.

Frank Rivera is CEO of Sarcoidosis of Long Island. A version of this originally appeared on his blog My Life as a Rare Patient.

March 9, 2018

 

 

Filed Under: Awareness, People & Organizations, Rare Community

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Global Genes Comments

  1. Thank you for saying this. I am an adult with a rare disease. I have 2 children, and not a day goes by that I wonder if I will be here to see them graduate from college or get married or have children of their own. My husband is wonderful and takes good care of me, but I often feel bad because this is not what he signed up for. I saw the story on the Today show as well and had the same thoughts as you. My children need their mother.

  2. Yes Frank.
    Adults. The other 50%.
    The long lifelong haul is a beast. Being the being the patient and your own caregiver, handling the finances, appointments, insurance, medications, and all of the usual things adults manage in life, with a laundry list of rare disease issues, Adults deserve a bit more respect. We are often non-existent, or less concerning, in the rare disease conversation. We are dismissed so often in our journey for care, we need to be embraced equally as we work to solve the issues. The vicious cycle continues when adults are not included or discussed with equal importance, then we do not feel welcome or addressed, somehow we don’t belong, when we ARE rare. We may not physically be able to show up every time – because we ARE rare. But when we are treated as not as important, we don’t want to participate either. First hand rare experience from patients is must always be at the core of the mission. Rare is 50%/50% – lets start being more inclusive of adults. Now. -Sharon Rose

  3. Chelsea Freund says:

    Thank you, Frank. Of course we don’t want anything bad to happen to children. But that doesn’t make our lives as adults any less valid or valuable. I used to swing dance and salsa dance and road trip around the U.S., and that came to a screeching halt at age 36. I didn’t expect to suddenly become invisible, or to be pitted against children for attention. It’s unsettling. I think you did a very good job of explaining what it’s like to experience this without everyone actually having to go through it themselves.

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