Tuesday, April 23, 2013

Muckel-What?!?! - Support for Autism and other Rare Diseases by J.D. Brown

First off, I want to announce that I will be joining Walk Now for Autism Speaks this Sunday at the Chicago Botanic Garden with my parents. This will be my first ever walk for charity and I’m so excited to just be a part of this great cause.

While I don’t personally know anyone who is Autistic, I do have firsthand experience living with a rare genetic disease. You see, I was born with Muckle-Wells Syndrome, a very rare auto inflammatory syndrome.

You’ve probably never heard of it and don’t feel bad if you haven’t. Most of the doctors in the country aren’t familiar with it. In fact, our motto is “We Are One in a Million”—because it is estimated that only one in a million are diagnosed—“But Together We Are Strong.”

I thank God for today’s technology and Social Networks like Facebook connecting all of us together, because we really are stronger together. I remember my childhood—back before smartphones and iPads, before everyone owned a laptop or even a computer—I remember feeling alone and isolated from the world. I remember the feelings of anger. Why didn’t my doctors know what was wrong with me? It was their job to know. Why didn’t they help me? I remember also the feeling of suffering in silence. No one understood the pain I dealt with on a daily basis. No one understood that I needed more rest than other kids, that I needed extra time and extra help. Most people couldn’t even tell that I was sick, and good Lord, but I was a shy child too! I never had the guts to tell people I needed help, partially because I didn’t know how to explain it to anyone. For the first sixteen years of my life, the doctors didn’t even have a name for my illness.

Worst of all, I think, was the fear of not knowing how it would affect my future. Would it shorten my lifespan? Would it affect my organs? Will it affect my mental health? Will I be handicapped? Can I have children? Will my hearing keep getting worse? Will I be deaf one day? Will I be like this forever? Will it get worse?

I’ll never forget the day I found a support group on Facebook, because I cried that day and for the first time, it was tears of joy. I had honestly believed I was the only one going through this, the only one battling one day at a time with this disease. I never thought I’d see the day when some else knew exactly what I was going through and had also lived it and survived. I felt like a weight was lifted from my shoulders. Like I finally had friends who knew the real me, despite the fact that I’d never met any of them in real life (though I hope to change that one day and participate in one of the annual Rare Disease Day picnics).

For those wondering, a brief list of symptoms includes hives/rash that are sometimes itchy, painful swelling of the joins, conjunctivitis, fatigue, fevers that can last anywhere from hours to days, vomiting and flu-like symptoms, headaches that can also last for days, inflammation that can affect other internal body parts over time (most commonly affected is the person’s hearing as well as sometimes pressure on the skull/brain). You can read more about it on the NOMID Alliance website.

There are many diseases that plague the world today and most are not always obvious or easy to live with, from depression to cancer, and everything in between. Even Autism has different levels and is sometimes not obvious to the casual observer. But I think the best thing you can do, if you or someone you know suffers from a disorder or disease is to reach out. Because no matter how isolated or alone you feel in your daily fight for a normal life, there is someone else out there going through exactly the same thing. Find these people. Share your story and listen to theirs. Get to know them. Together we are strong.


J.D. Brown

About the Author:  J.D. Brown writes Urban Fantasy for MuseItUp Publishing, as well as a monthly “how-to” newsletter column for PDMI Freelance Publishing. She graduated from The International Academy of Design and Technology with a Bachelor Degree in Fine Arts and currently lives in Wisconsin with her two Pomeranians. J.D. loves paranormal characters; from vampires and werewolves, demons and angels, to witches and ghost. She is a self-proclaimed expert in vampire and Greek mythology. Her writings are often a combination of suspense and romance. J.D. enjoys helping her fellow writers and interacting with her fans and leads an active life on the web.

J.D. Brown’s Social Network Links:


On Sale for $1.50 April 23rd & 24th!!! See buy links below!

“You’re a vampire” is so not what Ema Marx wants to hear when she wakes from a two-day coma in a cryptic yet exquisite castle in northern Finland. Unfortunately, it explains a lot. Like why she’s able to see in the dark and walk through solid objects. What she doesn’t understand is why the other vampires expect her to have all the answers. It’s their fault she turned into one of them…right?
Jalmari’s hatred for his old-man intensifies when he’s ordered to bring that troublesome girl to their castle. He has a clan to run, there’s no time for babysitting newborn vampires no matter how they were converted to their culture. But when a two-thousand-year-old premonition threatens to take the crown and his life, Jalmari sees no other choice than to take out the catalyst. Ema Marx. Fortunately for Ema, she could also be the clan’s only savior.
The race to figure out her vampiric origins is on. And maybe she’ll get the hang of the blood-drinking gig along the way…

Buy Links:


cleemckenzie said...

It is amazing how today's networking can alleviate that isolating loneliness and fear. We have an Autistic child in our family and we've done all we can to make sure he doesn't feel alone in what he's experiencing. Thank you for walking.

Anonymous said...

The main point of my novel Vampire Syndrome is that 'disabilities' do not mean we are not well-abled in other ways. Jack overcomes the vampire community's long-standing prejudice against Down Syndrome as the story progresses. And in Ch. 27, a group of vampires gets a rude awakening when they find out what an autistic vampire is really capable of. >=-)

Leona~Author said...

Nope, I've never heard of Muckle-Wells Syndrome, but not many have heard of CMT (Charcot-Marie-Tooth)either. My mom passed it to three of eight kids, and told us we just had bad blood. I didn't get a diagnosis until I passed it to one of my four. (50-50 chance) They say it's the most common form of muscular dystrophy.

Like you, the social networks opened the world to me. With chat and posting formats, I even forget I'm deaf at times.

I like your positive attitude in spite of all you've gone through.

Best wishes with your writing.

J. D. Brown said...

C. Lee - You're welcome, I'm really looking forward to the walk.

Vampire Syndrome - They say the best writers write about what they know. I talk about genetics in Dark Heirloom as well. I used vampirsim as a race, but one that could be passed on through the genes. I think every author brings a little bit of themselves to their fictional world.

Leona - You're right, I haven't heard of CMT. But I do know what it's like to have people say things like it's just bad blood. I've had a doctor tell me that I wasn't deaf, I just had "selective hearing". LOL! Yeah right. I wish doctors would just come out and say "I have no idea what's wrong with you" instead of trying to spin words to make them sound like they know what they're doing. And I know what you mean about the internet making it feel like you're not deaf. I miss so much in real conversation that talking sometimes feels like a burden, but online I can come out of my shell and shine. :)

Mark said...

Thanks for hipping me to the Austim walk. My cousin is autistic, so I'll check it out:)

Wendy said...

Hi JD,
I like how you felt better abel to cope when you found support from people who understand fully. It's better to belong to a community than to try to struggle on alone. Social media can be a real blessing, can't it?

Wendy said...

Hi JD,
I like how you felt better abel to cope when you found support from people who understand fully. It's better to belong to a community than to try to struggle on alone. Social media can be a real blessing, can't it?

J.D. Brown said...
This comment has been removed by the author.
J. D. Brown said...

Mark - You're welcome. They have them all over the country in the US and probably around the world too so you can find one in your area.

Wendy - That is exactly my feeling. There is no weakness in seeking help and it IS out there. Now, with social media, it's easier than ever to get help or at least find a support group. :)