The Voices of Acromegaly

What is Acromegaly?

For those who have been diagnosed with Acromegaly there is support, and you are not alone, so please click the Acromegaly Support Map link that follows to join the Acromegaly Support Map.

diseasemaps.org has created an amazing platform for over 800 diseases, conditions, disorders and/or syndromes connecting them to others who can relate, so they can find connections and resources to help them through. Support is key for those who are diagnosed with such conditions and knowing that you are not alone gives great peace of mind as well as hope.

There is also an amazing community for those diagnosed with Acromegaly offering an abundance of support and resources so those afflicted gain the support and understanding necessary. These wonderful resources will help those suffering come to terms and know that they are not alone. Please take a moment to become “Acromegaly Aware” and visit the Acromegaly Community website and for those who have been diagnosed with Acromegaly, our hope is that you gain the support you deserve. Please know that you are never alone.

About the Featured Video 

Published on Dec 1, 2014

Part I of The Voices of Acromegaly video series discusses the diagnostic journey of patients and some of the common themes and challenges involved in an acromegaly diagnosis. For more information, please visit http://www.aboutacromegaly.com outside of the US or http://www.acromegalyinfo.com in the U.S.
© 2014 Novartis AG

 

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Health Support and Awareness Advocate with a lifelong dream of being an educator, Vanessa was well along the path towards realizing her goal, having completed an Associate of Arts in Natural Science, Associate of Science in Social Science, Bachelor of Arts in Liberal Studies, and her Master’s of Education, Adult Educators and Administrators. Close to the culmination of the education required to reach her goal of a teaching career geared towards K-12, Vanessa had to make a difficult decision. She asked herself, “Do I continue on with my dream of being a teacher or focus on saving mothers and babies by helping to discover a cause and cure for Hyperemesis Gravidarum?” Vanessa was a volunteering for the Hyperemesis Education and Research Foundation [HER] when she realized there were limited options available when fundraising as a volunteer. The Packs decided to create their own foundation, one that would support all organizations seeking to discover a cause and cure for HG. The Packs held the first ever HG walk on October 20, 2007, A Walk to Remember: HG Walk America, raising awareness in the community and gaining much-needed support for those suffering from the disorder. Proceeds of the walk were donated to the HER Foundation. During the completion of Vanessa’s Masters in 2012, the Ayden Rae Foundation was born. After the birth and survival of the Ayden Rae Foundation, Vanessa and her family grew to understand that there was a greater need for more awareness and support for all diseases/conditions/disorders/syndromes and together they plan to spread awareness about every disease/condition/disorder/syndrome they are made aware of and help diseasemaps.org connect those who suffer from those diseases; discover that they are not alone and find the resources available for them. It is vital that we all do our part to help eradicate all disease, so families are no longer suffering. It is noteworthy to point out that the worst disease on the planet that most in the world overlook is aging and death! Remember to always be willing to learn more about things you aren't aware of and show compassion for those who are afflicted; awareness and support is key for all of us ❤