I Have A Rare Disease and You Can Help

29 Feb
I Have A Rare Disease and You Can Help

Today, February 29, is designated as rare disease day. As most of you know last year I was diagnosed with a rare type of cancer called Erdheim Chester Disease. I am unfortunate enough to be one of 304 people in the world with this rare disease. Sadly, there are hundreds of rare diseases and thousands of people who suffer from them. So, what does it mean to have a rare disease? It means finding a doctor who has ever heard of your disease, much less understanding what it is, is almost as rare as the rare disease. It also means, once you find a doctor that understands your disease, and you travel hundreds of miles to see him/her, and they prescribe you a treatment, you then have to go to war with the insurance companies to pay for your treatment because nothing is FDA approved for this disease. Then, the treatment itself is trial/experimental treatment because there isn’t sufficient research on how to fully treat the disease.

So, why am I telling you about all of this? Because you can help. You can help in three ways. First of all you can help make people aware of this disease. My doctor believes many more people has ECD, unfortunately, so few people in the medical field know about it that patients who suffer with this rare disease are either being misdiagnosed or not diagnosed at all. Secondly, you can give financially by going to the link below. Giving financially, helps spread awareness about this disease. It also helps provide the necessary funds for proper research so medical professionals are better equipped to treat this awful disease. The third way you can help is to pray. Pray for the people who suffer from this debilitating and deadly disease. Also, pray for the caregivers who spend countless hours taking care of their loved ones.  My prayer is that one day soon there will be a cure. Until then we keep pressing forward.

Click here to donate and to find out more information about ECD. 

Thank you and please share.


Posted by on February 29, 2016 in Uncategorized


Tags: , , ,

4 responses to “I Have A Rare Disease and You Can Help

  1. Walter Comer

    February 29, 2016 at 9:27 pm

    I’m with you, Rusty. I was diagnosed in 2007 with Erdheim-Chester disease and have been dealing with the symptoms and med side effects since. It’s not a party, that’s for sure. Oh. I was 46 when diagnosed.

  2. Kelly T.

    February 16, 2021 at 8:38 am

    Rusty, what is the update with your ECD? A friend’s husband was just diagnosed yesterday. I read your article about how you discovered you had it, and about a promising treatment due to being BRAF positive. Curious how that treatment worked, or any other developments you’ve had in your ECD journey since this post was created nearly 5 years ago? Hope you’re well.

    • rustykuhn

      February 16, 2021 at 9:18 am

      Since it took so long for me to be diagnosed, I have irreversible damage in my cerebellum, which causes difficulty in my walking and motor skills. Other than that, I am doing great! My treatment, Mekenist, and Kineret have done wonders. I am very active and feel great. There is a Facebook page for those who have ECD and their loved ones where your friend can get a lot of great encouragement. Each patient is different, so I would highly recommend for them to becoming a part of that. Also, ECD Global Alliance has a wealth of information.

      • Kelly T.

        February 16, 2021 at 11:12 am

        Thanks for your very quick response, Rusty! I am sorry to hear about the irreversible damage to your cerebellum, but it’s wonderful news that you are doing so well and have an excellent quality of life, feel great, and are managing the disease. I have shared your response with my friend who was diagnosed, thanks so much for the help and guidance. Best of luck to you, and thanks again!


Leave a Reply to rustykuhn Cancel reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: