12
Aug 2016

Not just MS, but also HHT

Not just MS, but also HHT
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This is my blog about having MS. However, I am going to talk a little about something else that I was diagnosed with 1 ½ years ago. It’s called Hereditary Hemorrhagic Telangiectasia (HHT). HHT is a vein disorder where they can develop without capillaries and end up tangling up like spaghetti. (Some doctor is very proud of me right now for that awesome description.) At those tangles, your veins are very weak and can leak blood. The complications are different for everyone.

  Several years ago, my aunt was having health problems and after many doctors and tests, they diagnosed her with HHT. She had three large tangles in her lungs that caused her to not be able to breathe very well and she had to have an oxygen tank in her 40’s. Doctors were able to do a procedure to untangle her veins and she is much better now! (Sounds so simple, but that’s amazing!) She was the first one in our family to be identified with this disorder and now there is a long list of us that have been diagnosed, as well. This disorder is hereditary, like the name says. If you have the mutated gene, then you have a 50/50 shot of passing it down to your child. Unfortunately, HHT seems to be running crazy in our family and although my two brothers don’t have their official diagnosis, they show all the signs.

To back up 13 years ago, while sitting with my parents and having the neurologist say, You have MS, it never crossed my mind what my parents were thinking. I just took the news and laughed because I had no idea what it meant. Over the years it still hadn’t crossed my mind. Fast forward to now when I have children of my own. Anyone that knows Tyler knows he has frequent nosebleeds for no reason. He also has a mom that has been diagnosed with HHT. And, he has a pin-drop size red mark on his tongue. Those are three out of the four criteria for having HHT. So, in the back of my mind I knew he had it - no big deal. We recently had him tested, but I wasn’t prepared for them to tell me, he has HHT. Something was different from just me thinking he had it to being official. As a mom, I was so sad for my son. I kept thinking that he is too young to be going through this and that I didn’t want him to have to deal with knowing he has a non-curable disorder. Those are probably the same type of things my parents were thinking with me having MS and HHT.

  So what’s the good new in all of this? We have a Heavenly Father who created us and takes care of us. He loves us so much more than we can fathom. We can put our trust in Him and find comfort, even in medical issues. In Him, we can have joy!

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