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June is Myasthenia Gravis Awareness Month

Contact us to purchase your Snowflake Ornament/Coasters. 

$50 each

100% of profits will be donated to the MGFA.

Snowflake ornaments

 

Rachel's Story:

When I was 14 years old, I was sitting in my High School English class and noticed I could look at my notebook and the blackboard at the same time. Thinking I was just tired, I brushed it off. The next day, I showed this “trick” to my mom and sister and immediately my mom scheduled an appointment to see the eye doctor. It was the first Neuro Ophthalmologist I saw to say I have MG. From then on, my parents took me near and FAR to find out more about MG, the treatment and if there is a cure.

MG was very rare to see in a teenager, and there were no support groups for patients my age. The treatment is different for every person with MG and there is currently no cure. I have been fortunate to have a support system to help me and pick me up (mentally and physically!), medications that I had to fight to get approval for and have much needed surgery. There are so many people who cannot get the necessary treatments to be able to do everyday things that we take for granted like walk, talk and have a drink of water without spilling or choking.

For more than 15 years, I have struggled with MG and I have the bruised kneecaps to show for it. Each MG case is unique, which is why it is called the “Snowflake Disease.” By supporting the MGFA, you can help find a cure and give patients young and old the knowledge they need to stay strong.

2004 – Diagnosed with ocular MG

2006 – Surgery for Sternotomy Thymectomy (Pretty awesome 7" scar!)

2007 – Short remission before my double vision came back. Began regular IVIG treatments

2008 – Stepped on a plane on my way to college & began having weakness in my legs

2009 – Weakness spread to my arms and hands

2010 – Walking and climbing stairs became more & more difficult

2013 – Started losing my speech

2014 – Could no longer walk, talk or hold a knife and fork. Emergency PLEX treatment

2015 – Regained my speech, but still have a hard time walking

2018 – Lost speech again, weakness continues. One more PLEX session

2019 – Approved for Soliris treatment, which has dramatically helped my ability to walk, talk and hold a pen again.

Today – Working and growing stronger!

Tomorrow – With your help, find a cure!


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