Because You Don’t Know.

Over the last month that I have been writing, I’ve been absolutely overwhelmed and shocked by the outpouring of love and support we have received. It has opened a dialogue with our loved ones around what we’re going through and what we need. This has been a wonderful outcome of this little project. As the blog is talked about and discussed amongst those close to us, two question consistently come up. Why am I doing this, and what am I hoping to get out of it? There is no judgment behind this question, but rather a tone of genuine curiosity. What is it, that I have to gain by posting in such a public forum the challenges facing our family? It’s a good question. I’ve had a hard time articulating the answer. For me the answer is emotionally intuitive rather than something that is clear-cut and easy to explain. Many assume it’s therapeutic, or that it is an easy way explain to all those that love us what’s happening. And while yes, both of these are true, they are only side benefits. The real reason is complex for me to explain, yet simple to feel. While I don’t feel like I owe anyone an explanation, I feel like the answer to this question is incredibly important. So here it goes…. I will try to explain why this has become so important to me and why I felt like I needed to do this.

When someone knocks on your door with the March of Dimes and asks you to support juvenile diabetes, people do so gladly if they have the financial means. As a society we know what diabetes is. We know that it affects thousand families. We know these families have expensive medications and that kids diagnosed with it go through a lot. Simply put, supporting diabetes is supporting a good cause. With a certain level of societal awareness comes a basic understanding of the disorder. If your friend calls and tells you her daughter is in the hospital because her insulin levels are out of control and she started to go into shock, you would know exactly what she means. You would be terrified for her. You would feel for her child. You would want to know how you could help. And more importantly, you would understand words like insulin and diabetic shock.

When your friend has to cancel a play date because her son is having an asthma attack and is in respiratory distress, you completely understand. Chances are you would text her throughout the day to check on her little boy and make sure that he was doing alright. You wouldn’t question the need for his inhalers, nebulizer and medications. You wouldn’t see him playing at the park and think “well he seems alright now he must not have asthma.” You would understand that asthma attacks are episodic. If you heard a child with asthma wheezing, you would know he needs help. If you were a close friend, chances are you would even know where to get his rescue inhaler.

Now, if I call you and say my child is having a dystonic storm. What does that mean? If I tell you I’ve had a bad night and need support because esophageal Dystonia was causing GERD, do you even know what I’m talking about? If I say my son’s chronic cough is due to Dystonic spasming, do you understand what I’m saying? If I simply say my son has Dystonia, do you know what it is without me having to explain it to you?

And here my friend, lies my struggle. The answer to all of these questions is no. You have no idea what I’m talking about. Even if you are a doctor or a nurse. Dystonia is more common than Parkinson’s, and yet everyone knows what Parkinson’s is. My issue is awareness. It feels like I’m showing up at your front door and asking you to support jibber jabbers. When I call you to cancel a play date, I feel like I might as will be saying “I can’t come because the thinga-ma-bob is bothering his watcha-ma-call it. When my son goes to the park and has the dystonia equivalent of a wheezing, no one knows he needs help.

How can I ask you to support gibberish? to understand babble? to help my sons when you don’t know what’s wrong? This is my attempt to translate the gibber jabber and the babble into plain English. To make you understand and be aware of the disorder, what it means and the overwhelming impact it can have. With understanding comes compassion for it’s impact. My dream is that someday dystonia will be a disorder that has the social understanding and support similar to that of diabetes and asthma. In reality, the kind of Dystonia that we suffer from impacts our life in ways not too dissimilar to severe asthma or diabetes. It’s obviously very impactful and challenging. However, with the right diagnosis, the right treatment and the right medication sufferers can live a very long and happy life.

The awareness is where the problem lies. My kids suffered for years longer than necessary, because nobody knew what they were looking at. We continue to struggle because treatment is not accessible. This lack of knowledge and awareness that the disorder exists, even within the medical community is tragic. We were luckier than most. Between my husband and sons we ONLY had to see 10 specialist over the course of four years to find somebody that knew what was wrong. Most people search longer and see even more specialists before they get a diagnosis. However, your GP can tell you that your child is wheezing and has asthma. Your GP would know to order blood test and check for insulin levels if certain symptoms appeared. This is what I want for other families and for other children with Dystonia. I don’t want them to have to go decades in pain simply because the doctors weren’t aware of their symptoms and that this disorder even existed.

I also want people to know outside the medical community. Community support, participation in fundraising campaigns, research grants, and social awareness all start with the general public. How can these things happen for our children and how can we find new treatments, or even get new medications if nobody’s ever heard of Dystonia!?

So, long story short. To you reading this, the fact that you are reading this is why am doing it. For those of you who don’t have Dystonia, do you now know what it is? do you know how it impacts individuals and families? The next time you hear someone trying to raise money or awareness for Dystonia, will you feel like it’s a good cause? Will you have compassion and understanding when you think of dystonia sufferers? If you can answer yes to even one of these questions, then you know why I am doing this.

As September ends, I plead with all of you to go to the White House website and sign the petition to make September Dystonia awareness month. It is a very important first step in helping 500,000 people and their families across North America. You do not have to be American, you just have to have a valid email address. It’s free, it’s easy, and it’s fast. Please click on the link below to show your support.

http://wh.gov/lh5aj

Thank you for reading, and for showing your support for Dystonia!

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2 thoughts on “Because You Don’t Know.

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