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Rare Disease Day: Those With Rare Diseases Should Be Heard

Updated on February 28, 2017

Look Around

A young woman waits in the hospital waiting room for what seems like hours, trying to be patient as she knows the staff is busy. This is not her first visit, and it won't be her last. It will be, however, yet another visit to change her PICC line; another visit to try and stave off infection once again from the myriad tubes and dressings that adorn her body but are usually covered by loose shirts. She knows her mother, who is once again sitting beside her, also waiting, worries about her a lot, as she does. She's in her very early 20s, and while the disease she has only started with her a few short years ago, it's rapidly seeming as though she can't recall a time without being sick or having problems. She knows other kids don't deal with the health issues that she is, but she's determined to continue living life as best she can.

Another woman - a mom - walks her children carefully to school, at once grateful and resenting the cane she's using to maintain her balance. She's wearing dark glasses, knowing that the light will only serve to aggravate her symptoms further, and knows that shortly after getting home and giving the house a quick tidy, she'll need a nap, whether she likes it or not. They shoot horses when they go lame, don't they? Her mouth twists into a wry smile at the thought, knowing that it's not the first time she's had the thought and knowing that she'll continue to have good and bad days.

These are by far not the only two individuals living with rare diseases or disorders; few have heard of the conditions that they are living with, and while the medical community continues to treat them as though they are learning experiences, to some extent, instead of people, they continue to fight for answers.

In America, a disease is defined as rare when under 200,000 people are diagnosed with it. Therefore, it is all too easy to look at individuals and think they are just gorgeous people who haven't a care in the world, but underneath the surface, there could be a whole host of health problems that no one could even guess about.

Who's Affected?


Staggering Numbers But Still Hard To Understand

It's truly challenging to understand the impact a rare disease will have on someone's life. Most of us couldn't even imagine until we are forced to step in the shoes of someone who lives with a rare disease, or someone who's related to someone living with a rare disease.

Every infection seems to become a battle for life.

Every test, another invasion that might make a rare disease patient feel as though they have once again become a human science experiment or pincushion.

It makes sense that people will look at others who are attempting to explain their rare disease to someone as though they have grown a toaster for a head; it would be akin to explaining why you have freckles when neither of your parents do. For some of these patients, there is a real dearth of knowledge out there about their condition, so that can also cause fear, anxiety, and just general uncertainty about the future, which is no way to live.

Some individuals with rare diseases might spend much of their time indoors, away from individuals simply because it's easier than running the risk of an infection. Others may have no choice but to spend their time indoors and learn how to live life differently.

What these individuals living with rare diseases and their families need is compassion and understanding. It's all too easy to simply shrug and say "I don't get it, so let me know when your son/daughter/spouse/other family member is feeling better and we'll talk," but those families living with the reality of rare disease need support more than ever before. They need people to reach out, ensure they're still doing all right, if for no other reason than they need that human connection.

So today, and every day, reach out and let that person living with rare disease in your life know that you're still there, fighting for them and supporting them throughout their struggle.

Believe me, they appreciate it more than you could possibly know.

Support. Understand.




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    • Patty Inglish, MS profile image

      Patty Inglish 10 months ago from USA. Member of Asgardia, the first space nation, since October 2016

      Thank you for writing this Hub! Not a disease, but a rare condition, I am "deathly" allergic to marijuana. In fact, it can result in my death. The first time (working at a gathering where 100s were smoking it) required medical attention and now I run when I smell it. I could die of the results of the symptoms like heavy vomiting that cannot be stopped on its own and several other symptoms.

      Bless you for highlighting diseases and conditions that others have never heard of.