A Message of Hope for World Rare Disease Day 2017

It’s World Rare Disease Day, and I feel more encouraged than ever this year. You see, years ago World Rare Disease Day was barely a blip on the social media radar. Few people knew about it, and even fewer cared. I’ve not even eaten lunch yet today, and I’m already seeing #WRDD17 trending on social media. Friends and family members have shared WRDD information- even those who are personally untouched by rare disease. It’s touching and encouraging to see the reach of rare disease advocacy expanding into new corners of my world.

I’m from a rare family. The scope of my immediate family covers multiple rare disease- so much so that my geneticist refers to me as a “geneticist’s treasure.” (In case you’re wondering, being a treasure chest of genetic abnormalities is way more of a curse than a blessing. The whole family would prefer to be uninteresting.)Roughly twenty years ago, my older brother was diagnosed with Wilson’s Disease- a rare genetic disorder which causes copper to build to toxic levels in the body. At the time, (when Internet and social networking were still limited) there was limited information about his disease available and even less support. My parents and brother did what they could to inform themselves, my brother and I, and others in direct contact with my brother, but at the time the spread of information was slow.

A few years passed, and my Mom was diagnosed with Retinitis Pigmentosa- a rare eye disease in which the back wall of the retina is damaged causing limited vision and eventual blindness. Again, she was alone in her diagnosis. The extent of empathy shown to her was the random people who tried to empathize with her condition by telling about that one time they had pink eye. (Lol, seriously, why do people try to empathize using completely unrelated situations?)No doubt there were a lot of lonely and scary days as she tried to process her diagnosis.

Fast forward to now. There are online support groups, research agencies report findings on social media and web sites, organizations like Global Genes make an effort to make patients’ voices heard. The world isn’t quiet as dark and hopeless as it was 15-20 years ago- when having a rare disease meant that you carried a personal responsibility to inform others. Are there still days when it’s frustrating to be rare? Heck, yeah. I imagine there always will be. But as a proud member of a family full of rare genes, I think the future looks bright. There are so many who are blessed with gifts of research, advocacy, and treatment that I believe will be able to help my family and I in the future.

So, on World Rare Disease Day 2017, raise your voice. Speak out. The time for silence is over. The louder our voices are the more likely we are to be heard. Awareness leads to research funding. Research leads to a cure. Care about rare, my friends.

Peace, love, and health.

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4 thoughts on “A Message of Hope for World Rare Disease Day 2017

  1. Elizabeth

    OMG!! Tiffany….I discovered your blog today. You are totally my long lost EDS sister. If I could get off my couch today, I would drive to wherever you live and give you a hug. (Wait?? Long distance trip, I’m going to need several months to plan it and then I would probably cancel on you at the last minute because of some weird body thing, Amen?)

    I’m a 38 year old mother of two, former middle school language arts teacher, doggie lover (my sweet boy is 9 year old Buckley), and I think Joe might have competition from my husband Jason for best EDS husband ever!!

    I can’t wait to read more of your entries. I already burned through several and kept scrolling and reading until my index finger got a cramp and I felt a migraine coming on.

    God bless you for your work!

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  2. carolyncordon

    Good on you for the work you do, spreading the word about rare diseases, and what it means to you, and others similarly affected. Having a chronic illness is never a truly fun thing, as I well know (dx with multiple sclerosis in 2012). But connecting with others who do understand and so don’t make stupid assumptions, is a great thing.

    Google is a fine tool in tracking down other people, new treatments and ideas, and so on, but it can also be terrifying, to read about symptoms you hadn’t heard about yet. I have to admit I hadn’t heard of your particular disease before now, and I wish you well in dealing with it through your life. Life is a bitch, but being able to laugh at it helps …

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    1. tiffanyrearly Post author

      Thanks for reading and taking time to say hi! I have several friends wth MS, and I’m truly sorry anyone has to deal with such a frustrating and complex diagnosis. All the best to you!

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