How Wilson's Disease Affected Me

---

My name is Samantha Akin. I am 18 years old. I was diagnosed with Wilson’s Disease earlier in January of 2015, and since then have been on Syprine (aka Trientine). Some of my symptoms were: my handwriting had worsened over the years (micrographia), I had started having fine tremors in my hands, and had severe mood swings. I have also experienced joint aches and swelling for a few years. However, I was very fortunate that my pediatrician thought to check for Wilson’s Disease.

 

The result of my diagnosis was/is: my liver is currently at stage 3 of 4 of liver failure.

 

The tests that have been run: I have had one liver biopsy, one upper GI endoscopy, a hour long MRI twice, countless blood draws / tests, and several 24 hr U/A, all before my 18th birthday. I had a neurologic flare in which I had a severe headache and could not speak clearly for roughly 2 weeks I don’t know if this is because of the high dose of medication or my brain releasing copper.

 

But all in all, I would say I’m doing okay. My hope for this website is to spread awareness for WD and help people with Wilson's connect and help each other.