New Treatment For a Rare Genetic Disorder Called Pompe Disease
New Treatment For a Rare Genetic Disorder Called Pompe Disease

Show: Insider's HealthRadio


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Guest(s)
Monique Griffin
Topic
Healing and Battling Disease
Topic Info
In 2005, Monique Griffin was a fairly healthy woman of 30 who had a high-powered career opening resorts around the world for casino owner Steve Wynn. She was working 70 hours a week and traveling around the world. But soon a range of unexplained health problems including severe headaches, fatigue, difficulty breathing and trouble walking stopped her career and threatened her life. She eventually was unable to walk without a scooter. She lived with these and other symptoms for ten years before she was properly diagnosed with a rare genetic disease called Pompe.

Monique joins the show to share her personal story and battle with this progressive, debilitating and rare neuromuscular disease and the new treatment procedure which has shown positive results.
Guest Info
Monique grew up in Southern California and led a very active life, she was a gymnast, dancer and swimmer with dreams of becoming a tightrope walker. She attended the University of Nevada where she started experiencing severe headaches and muscle weakness, but she pushed through her pain to complete her BA in journalism and her MBA abroad in Wales.

In 2005, Monique Griffin was a fairly healthy woman of 30 who had a high-powered career opening resorts around the world for casino owner Steve Wynn. She was working 70 hours a week and traveling around the world. But soon a range of unexplained health problems including severe headaches, fatigue, difficulty breathing and trouble walking stopped her career and threatened her life. She eventually was unable to walk without a scooter. She lived with these and other symptoms for ten years before she was properly diagnosed with a rare genetic disease called Pompe.

Since she began her infusions with Lumizyme?, a recently FDA approved enzyme replacement therapy indicated for the treatment of Pompe disease in older children and adults, Monique has seen improvements in her strength and ability to breathe and is also now able to walk more often without the use of a scooter. She is active in physical therapy to build her strength and is once again planning for her future. She is also a patient advocate, working to help other people affected by Pompe to take action and get the help they need.

In the future Monique hopes to regain some of her independence and mobility. She currently uses a scooter to get around and she is working with a physical therapist to regain some of her core strength. She would like to get involved with her local Florida legislature to mandate that newborns be tested for Pompe to ensure that they receive treatment for the disease as soon as possible. She would also like to return to work in the near future.
Host
Danika Quinn
20100802/1031ih4c.mp3
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