Joanne's Story

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Joanne
21
Singapore

I did have some episodes of passing out as a kid, it was nothing too bothersome. However, these episodes started to increase with frightening frequency in 2003. As a result, I went to see a cardiologist who ran the usual battery of tests and nothing came back positive with the exception of the tilt table test. Despite the positive result, he could give me no answers and medications were not helping. He told me he didn't know how to help me anymore. Stuck and frustrated, I went online in search of answers. A mother heard about my symptoms and emailed me. Through her, I found DYNA. Through DYNA, I learned more about dysautonomia and its symptoms. Little did I expect to find out that the positive tilt table test was indeed an indication of dysautonomia.

In July 2005, I was fortunate enough to be able to attend the DYNA Summer Chill and it was during this visit that Debbie was able to get me hooked up with Dr Abdallah. He studied the results of my tests and confirmed that I had Dysautonomia. This explained the passing out, the rapid heartbeats and the overall lousy feeling and fatigue I'd been feeling. He prescribed Florinef and Midodrine that I'm still on and it seems to be helping a little with the symptoms. The dysautonomia seems to be affecting my tummy. I have periods where I'm really nauseous and can't eat a thing. This lands me up in the hospital for long periods and we almost started TPN. But as of now, I'm hanging on and trying to avoid that.

Dr Abdallah also told me that my joint problems were due to the Joint Hypermobility form of Ehlers-Danlos. I had all the symptoms of it. The hypermobile joints and the elastic like skin. Apparently, a lot of people with dysautonomia have the Joint Hypermobility form of Ehlers-Danlos too. There seems to be some sort of connection between the two. For this, I have recently started PT in the hopes that it will strengthen my muscles holding the joints together so that I dislocate less.

So that's my story in brief. It has been a long and rough journey and right now, there's still no end in sight. With most of the stuff I have, there has yet to be a cure. I deal with dizziness, passing out, joint and muscle pain, dislocations, swelling, nausea, brain fog, fatigue, abdominal pain and many other symptoms daily. I have the weirdest dietary requirements, high salt and low fiber. And it is very hard to live life like a normal person.

However, this journey has taught me so much; Patience, hope, courage and the meaning of living life to the fullest. Today, I might be able to do something, but it doesn't mean that I'll be able to do it tomorrow. And that is very frustrating. However, I've met so many people, both in person as well as online through DYNA, and I have learned much from them. They have helped me through the most difficult and darkest of days. Knowing that there are people out there who know and understand what I'm going through has made the journey so much easier. Where I come from, support is hard to come by, so it is a great comfort to know that my DYNA friends are but a few mouse clicks away. DYNA has become my family and words cannot express how glad I am to have a family as great as this one.

Thank you for opening up DYNA to the world. It has truly impacted and changed my life. Most of all, it has given me the most important thing of all. Hope. And for that, I thank all of you.