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A Diagnosis!

Posted by Karen King on January 11th, 2014

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First off, you probably notice a name change in the title of this fundraiser. We had to switch it back to My Impossible Medical Journey Fund because the name of the fundraiser in the URL needs to match. For consistency purposes, from here on out, the name of the fundraiser is My Impossible Medical Journey Fund. Sorry for any confusion. 

The other reason for the name change is two-fold. As of January 7, 2014 Megan received a diagnosis from the geneticist. As you may have heard, the state of Illinois was declared a disaster on Monday January 6, 2014 due to the subarctic temperatures and much snow. Meg and I tried to see if we could use these circumstances to our advantage. So we called and were able to get into the geneticist because they had a cancelation. We very carefully made our way to the doctor's office. Just like that, 24 hours later Megan was contacted with a diagnosis. 

The verdict: Joint Hypermobility Syndrome (JHS) aka Ehler-Danlos Syndrome Hypermobility Type (EDS-HT). This is a genetic connective tissue disorder which makes your muscles, ligaments, tendons and an array of other things in your body weak because your body lacks the protein collagen. Our emotions are all over the board. There is validation to explain why surgeries have failed approximately every 3-4 months. There is anger that this condition was ruled out almost 7 years ago because treatment, bracing, pt, everything, would have been very different. There is hope that with proper protocol after surgeries Megan's outcome will be better. She will receive better care since all of her doctor's will know she has this condition. 

You might be thinking, "Oh good, now they will be able to fix Meg and get her all better". Sadly it's not that easy. She still needs to have the reverse shoulder replacement and she still needs to have the scapular muscle reattachment surgeries this year. Joint Hypermobility Syndrome is a chronic condition and there is no cure at this time. It is a very difficult condition to live with because it doesn't strictly effect your joints. It can effect other systems of the body too.

Megan is going to have to see a cardiologist so they can determine if she has Postural Orthostatic Tachycardia Syndrome (POTS). JHS & POTS oftentimes go hand-in-hand. It sure would make a lot of sense since she is oftentimes dizzy when she goes from sitting to standing. Her resting heart rate is always rather high and her heart rate is fast. 

As a parent it is very hard to watch your child go through so much. It is definitely not an easy journey for anyone involved. The amount of emotion and time that goes into care giving is huge.  The financial impact is indescribable when the extreme expenses go on year after year. To put things in perspective, the reduced medical rate during off-season in Vail, CO is $2600 a month; strictly for rent. We will need to be there for at least a good 4 months. That' $10,400 with no medical bills involved. I have spent years saying I need a new magic wand as mine seems to be broken.  I fully realize there are so many of us that journey with our children through their medical issues.  It can be a very lonely experience. I hope and pray you are all surrounded by the love and care of your family and friends. Companionship certainly helps!  Once again Happy New Year to you all. Please keep sharing Megan's story. 

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This fundraiser is for: Megan King
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