Tuesday, April 19, 2011

Meet My Friend! Monique of M.E.G's Confessional!

I am privileged to introduce you to my dear friend Monick or Monique! I met Monique in January of 2002 when we were both studying abroad in England! Monique is one of the most amazing and courageous women that I know. I am so privileged to call her a great and dear friend.
Monique and I at the Food & Wine Festival at Epcot in the Fall 2010

Hello Hiya Luv readers! My name is Monique and Gina was kind enough to offer me a guest spot on her wonderful blog. I have known Gina since 2002 when she moved in across the hall from me at the University of Reading in England. We became fast friends and traveled all over Europe together.
I recently opened an Esty shop, pearls4pompe, for my handmade jewelry and I am donating a portion of the proceeds to Pompe research. Right about now, you’re probably wondering what the heck Pompe is and why does it need to be researched? Don’t worry, there are plenty of people who don’t know what Pompe Disease is - many of them doctors. Well, unless of course they saw the 2010 film Extraordinary Measures, which tells the story of one father‘s fight to develop a treatment. I was diagnosed with Pompe Disease in January of 2010. It is a very rare form of life threatening Muscular Dystrophy (MD) that effects only 5,000 - 10,000 people worldwide. I am fortunate in that it is the only form of MD that can be treated. I have to sit through 4-5 hours of an IV infusion every two weeks - this is what inspired me to create jewelry. In addition to my infusions I also hook myself up to an electro-muscle stimulator for several hours a week. With all this time in a chair I wanted/needed a creative outlet - and ta da my dream of opening an Esty shop emerged. I also thought it would be a good way to help spread awareness and give back to the community if I donated a portion of my sales to Pompe Research. While there is currently a treatment for Pompe, there is no cure - not yet. But I faith in the researchers who are slaving away in the laboratories because they are really doing amazing things and anything is possible. After all, the treatment for adult-onset Pompe was only approved by the FDA less than a year ago and I was the first US patient to receive the newly approved drug!

My Esty shop is brand new and very simple, but I have been working on it for several months now. I have been running ideas and designs by Gina the whole time and she has been incredibly supportive. I never realized just how much work goes into a project like this, and I now have an even greater appreciation for all the other crafters out there. And I totally understand how hours and hours (along with $ and $) can be spent in craft stores - it is addictive. I have to say, my favorite part of the process has been coming up with creative names for each piece. Is that strange? I would love to expand my horizons and learn new skills, but with my limited amount of time and energy, for now I am happy with developing my jewelry line. It has been a long journey to get me here, and I look forward to the road ahead.
 My girl Monique & her gorgeous necklace
Pompe has taken a lot away from me, and doing things like opening this shop and donating to Pompe research is one of the ways I fight back. I am also a Patient Advocate and serve on Genzyme’s (the biotech firm that manufactures my infusion drug) patient advisory board. They also send me to various speaking engagements around the country and I help patients understand the journey they are going on. I also help educate doctors about diagnosing a rare disease. It is all part of giving back to the patient community as well as taking back the power in my day to day struggles with Pompe. So as you can see, crafting for me is not only somewhat therapeutic, it is part of my fight! And I will keep fighting!
If you’d like to know more about my journey with Pompe please feel free to visit my blog M.E.G.'s Confessional

Isn't Monique amazing? She inspires me every. single. day.



4 thoughts:

Mama Pea said...

Monique is awesome! I just hearted her Etsy shop. And checked out her blog, which is also very cool.

Collette Osuna said...

So nice to meet you..super cute shop too!!!

la petite coquine said...

What an incredible story and an amazing woman! I'm floored!

Watkins35 said...

what a wonderful post & friend you have gina :) xox

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