Did you know 1 in 10 people, or 10 percent of the population, will be affected by a rare disease at some point in their lives?
Having such a rare disease as a young person is very difficult. This is why I really admire others with rare diseases but also I would absolutely love more research on rare diseases so other people don’t have to go through numerous hospital visits where doctors don’t understand the condition you have to live with.
Research into rare diseases isn’t just vital to maybe treat or even cure these diseases, but research can also put us as young people much more at ease because it means medical professionals can be given more knowledge on some of the rare diseases their patients have to live with daily.
I have been in the emergency room quite a bit over the last four months and undergone different tests and appointments. It hasn’t been the easiest of times but most of all it has been extremely frustrating that my rare disease is not understood. Don’t get me wrong, some doctors and nurses really have done their best to understand, but even with me trying to explain it, it is obvious it is difficult to understand what it is. I am not expecting every doctor to understand every single condition, but even more research done on other conditions relevant to my own means it could gather more information. Going to the ER as a young person and not knowing what’s going on can make you feel vulnerable. Going to the ER as a young person with a rare condition that no one understands makes me feel extremely worried.
Every day, rare disease patients have to show courage and keep believing that one day, there will be research on their illness which could have a life-changing impact on them. Until then, they rely on the professionals who we put trust in every day to treat us.
Patients themselves also like to become their own researchers because as we are waiting and forever hoping for some vital bits of research on our rare disease, we want to do as much as we can, or at least do research ourselves to try and come to grips with what we are dealing with on a daily basis. Many people with rare diseases become glued to Google and other ways of searching their diseases, but as we all know, this can just worry people, more and not everything you read is valid. But without any research from professionals, what can we go by?
So to young people with a rare disease: do not give up hope because researchers want to find new treatments just as much as we want to be treated. It is possible that as we get older, there could be some information or treatment which could change our lives forever.
People may not see or understand rare diseases, but we feel them and they really do matter.
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Thinkstock photo via DragonImages.
I’m Katy and I live with the rare disease Scimitar Syndrome. I have my own podcast called 'my rare disease' all about giving rare disease patients a platform to share their stories and to educate others about how illness can impact different elements of a person's life. I am passionate about raising awareness of rare disease because collectively having a rare disease is not rare, it affects 1 in 15 people worldwide and therefore we need to be heard.
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