I Will Get Treatment!

My trip this week to Mayo went very well. I met my new doctor and he has scheduled me for more tests and meetings with a physical therapist and the pulmonary specialist. He is also weaning me off of one of my headache medicines.

The real good news is that I was accepted into an ATAP study – basically a clinical trial for Pompe Disease where I will receive enzyme replacement therapy (ERT). This is great news! This will stop the disease from progressing and could possibly return some of my strength. I am scheduled for my first IV infusion on March 15, after that I will receive the treatment every 2 weeks forever or until another treatment can be developed. I will meet with the doctor who is heading up the study on March 1 and he will conduct some preliminary blood work at that time and I’ll sign my life away to medical science and officially become a lab rat.

It is such a relief to be scheduled for treatment for a disease that was once a mystery. Just think, it was only a two months ago that my aunt and I braved a blizzard in Minnesota in search for answers at the Mayo Clinic in Rochester and now on March 15 I will get my first treatment for Pompe Disease. I only found out about the ATAP study because a father of a young Pompe patient passed a ton of information on to me an encouraged me to “be my own advocate” and luckily I took his advice to heart and researched what was available for me. (Thank you Matt!) Openings in clinical trials are few and far between, had I waited who knows when another opening would have come up – if ever. I am lucky and thankful to the online Pompe community. There are only an estimated couple hundred people living in the US with Pompe Disease so we are small yet supportive community.

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One comment

  1. Yay! I am so excited for you. Let me know if you need an infusion buddy, I’ve been there, so I know how boring it can be. Any idea if you get Benadryl too? They always gave me that as well in case I had an allergic reaction. 6 hour infusion that I would mostly sleep through. 🙂

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