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Kerry’s Range of Rare Disease Advocacy

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By Kerry Wong

To those who are thinking about volunteering or getting involved with the rare disease community: Do it! Do it! Do it! Seriously, there are so many different ways to get involved with the rare disease community, that no matter your interest, skill set, availability, or ability, there is always something you can do. What’s great about it is that it can be empowering and comforting – especially if we become disabled from the disease, it shows us that there is still something we can do. It can also be so much fun, and the more we get involved, the more people we can meet – and these are people who really “get” what we’re going through. It shows us that we are not alone. 

Advocacy isn’t just about going to Washington, DC to ask senators for legislative support (it is that, but it’s so much more). Self-advocacy is speaking up for ourselves, our needs, and our wants. It’s telling our doctors that what we are feeling does not align with what they are seeing and we still need treatment, or that the side effects of a drug are intolerable and we need to try something else. It’s telling our employers that we need accommodations. It’s telling our friends or family that we are not feeling well enough to attend a party. It’s sharing our stories so that others can understand and know they are not alone. It’s telling ourselves that we still matter, that it’s okay not to be okay, and that we deserve the rest, accommodations, and treatment we are asking for. 

NORD was the first rare disease organization I was introduced to, but over the years I’ve looked into a few others. Overall, NORD is the organization that has offered the most: from information to guidance to programs and conferences, I feel confident sharing NORD’s resources. The staff members I’ve encountered have been so kind and eager to help, and the Living Rare Forum was such a positive and powerful experience. I look forward to supporting all that NORD offers. 

I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) them. I’ve been writing for years – I started a blog over 10 years ago, and now I have a regular column at Sarcoidosis News. Putting my words out there is cathartic for me; I can write about my struggles or frustrations, and it releases some of that stress as I get towards the end. I can also share a good experience or tips that I’ve learned to help make something easier. Best of all, it helps me connect with others in the sarcoidosis/rare disease/chronic illness community. I’m just one person, but what I want to do now is bring together a variety of voices – a diverse group of people, locations, diseases, and abilities. We all have something to share, and we all have even more to learn from each other. 

For my book, I’m looking for true stories sharing some aspect of life with a rare disease – the experience that someone without a rare disease wouldn’t know about. That could be the way rare disease has changed someone’s life, a particular challenge they’ve had, a way they’ve found to deal with a challenge, or more. There are a few specific category prompts, but just like we don’t always fit into diagnosis or treatment categories easily, there’s a chapter for stories that don’t quite fit one of those prompts. 

Anyone living with a rare disease can be a part of this book project. All the submission details can be found here. Individuals interested can send their stories (or any questions they may have) to [email protected]