If you or your loved one is living with a rare chronic disease, you’ve probably gone through the various stages of grief: denial, anger, depression, bargaining, and hopefully acceptance.
Depending on which stage you’re in regarding your diagnosis, you’ve probably also educated yourself, put together your healthcare team, and if you’re really lucky, you’re taking an effective treatment prescribed by your doctor.
I say “lucky” because thousands—tens of thousands—of people have been diagnosed with a rare disease and don’t have access to effective treatments. If you’re on a treatment that is working to control your disease you are indeed lucky—very deserving, but very lucky!
Let me explain why.
Ever wonder about the lack of good drugs meant to treat rare diseases? Well, the pharmaceutical industry won’t make treatments for rare diseases unless they’re guaranteed a return on their billion dollar investment to bring a drug to market.
It’s a huge financial risk for them—and after the pharma companies add up the price of research, development, and clinical trials, treatment costs for rare diseases become astronomical. So even if/when they develop a drug for a rare disease, it’s frequently so costly, the vast majority of patients can’t afford it.
But perhaps the biggest “luck” factor is the fact that no two people will respond the same way to treatment; some drugs work well for some individuals (at least for a little while), but they may fail to help others. Sometimes, the drugs cause intolerable side effects. So my heart genuinely goes out to anyone living with a rare disease.
Seriously. It takes immense fortitude.
A couple of days ago, I came across an article about a darling little girl from Sidney, Ohio. Her name is Anna Neu and she‘s living with a rare form of arthritis called ankylosing spondylitis (AS), which damages the spine as well as other joints.
This little girl is so darling– she reminded me of Cindy Lou Who (you know, from How the Grinch Stole Christmas). Anna’s only six years old, but she seems like the sweetest little thing, which means her parents must be so loving, kind, and compassionate themselves. It’s clear they have raised her well.
Source: Giphy
Anna is the youngest person to be diagnosed with ankylosing spondylitis and her family has rallied around her.
The more I’ve read about little Anna, the more impressed I am with her and her entire family. After trying several different treatments that haven’t worked for her, the Neu family is doing everything they possibly can to help raise awareness about this painful and debilitating disease. Sadly, its cause is unknown.
Recently, they caught the ear of their local chapter of the Arthritis Foundation, who has named Anna the youth honoree for their annual Jingle Bell Run/Walk, which helps raise awareness for the more than 40 kinds of arthritis. Although there will be many Arthritis Foundation-sponsored walks across the country, Anna’s walk will take place on December 5th in Columbus, Ohio.
I know your life may be busy and at times difficult, but if you have room in your schedule and your heart, and if you are physically able, put on a festive holiday hat and go to the closest Jingle Bell Run/Walk to you—even if it’s just to watch ‘em run.
