Building a Rare Disease Treatment Plan Brick-by-Brick
Last updated: September 2023
It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as well as from the experiences of those around me living with rare chronic disorders.
There is no quick fix for my rare disease
When I was first diagnosed with my rare disease, I was immediately looking to be "fixed." My narcolepsy onset suddenly during college, and I found myself living a life that did not even feel like mine anymore with the new and extreme symptoms I was experiencing.
As it turns out, there is no immediate "fix" for narcolepsy – or, really, many rare diseases. Treatment options were limited for me, especially because of how rare narcolepsy is considered to be.
Building blocks of rare disease treatment
Over time, I've realized that an effective rare disease treatment plan has many different components. Each piece is a building block. Take one brick out, and the structure won't necessarily crumble – take multiple bricks out, and it just might! Some building blocks of rare disease treatment plans are more obvious than others, such as prescription medications.
I had hoped there would be a single medication I could ingest to "fix" my rare disease symptoms. As it turns out, it is much more complicated than that. My rare disease has a variety of symptoms – and each symptom is treated with a different medication. Medication has been invaluable for my rare disease treatment plan, but it isn't the only important component.
One important building block of my rare disease treatment plan is my lifestyle. For me and my narcolepsy, this entails a variety of things – multiple scheduled naps throughout the day, for one. A consistent sleep schedule, for another. (Well, as consistent of a sleep schedule as a person with a medically messed up sleep-and-wake cycle can manage) I also have to be careful not to overuse my brain or body. To do so results in burnout, which can bring on worsened narcolepsy symptoms. It is in my best interest to not neglect the lifestyle management building blocks of my rare disease treatment plan. When I neglect any building block of my treatment plan, I am worse off for it.
Another important building block of my rare disease treatment plan is community. My family and friends struggled to understand my disability since it onset suddenly and changed me and my life in many ways. When I started attending narcolepsy support groups online, I found so much support there. Getting validation from other people experiencing my rare disease made such a difference for me and my mental health. Yes, days are still hard. But at the end of each day I know that I have a group of people that love and support me and understand my symptoms, because they, too, experience them.
What does your treatment plan look like?
Building a rare disease treatment plan isn't easy. There isn't a quick-fix. I've had to build my treatment plan bit by bit, and it helps knowing that I can rely on other parts of my treatment plan if, for some reason, I lose access to others.
What do you consider part of your rare disease treatment plan? Let us know in the comments below!
How do you feel about your support system?