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I’m Kevin. This Is My Story. – Gaucher Stories
https://gaucherstories.wordpress.com/2016/03/15/im-kevin-this-is-my-story
Everyone's got a story. Share yours here! I’m Kevin. This Is My Story. March 15, 2016. March 15, 2016. Over the next decade and a half I participated in countless clinical trials all aiming to find a treatment for Gaucher’s disease. I don’t think I need to go into detail about the number of liver biopsies, liver and spleen scans or bone marrow tests I had, not to mention all the needles and blood draws. Suffice it to say, there were a lot! Kevin R. Kline; Livingston, NJ. Leave a Reply Cancel reply. Featu...
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I’m Basil. This Is My Story – Gaucher Stories
https://gaucherstories.wordpress.com/2016/08/23/im-basil-this-is-my-story
Everyone's got a story. Share yours here! I’m Basil. This Is My Story. August 23, 2016. August 24, 2016. I went straight to the Drs. rooms. He was our family Dr.and he suspected I had malaria as my spleen was swollen but he also sent me to the labs to have an extraction from the centre of my sternum to check for Gaucher’s disease. Wow was that painful! This was 42 years ago. Anyway to cut a long story short, I had Gaucher’s disease and so did my sister but not my brother.he was lucky! Address never made ...
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August 2016 – Gaucher Stories
https://gaucherstories.wordpress.com/2016/08
Everyone's got a story. Share yours here! I’m Basil. This Is My Story. August 23, 2016. August 24, 2016. I went straight to the Drs. rooms. He was our family Dr.and he suspected I had malaria as my spleen was swollen but he also sent me to the labs to have an extraction from the centre of my sternum to check for Gaucher’s disease. Wow was that painful! This was 42 years ago. Anyway to cut a long story short, I had Gaucher’s disease and so did my sister but not my brother.he was lucky! August 17, 2016.
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December 2016 – Gaucher Stories
https://gaucherstories.wordpress.com/2016/12
Everyone's got a story. Share yours here! Feature: With A Warrior’s Heart, 2-Year-Old Ridgefield Boy Fights Rare Disease. December 21, 2016. December 21, 2016. Read more about Luke’s story. Written by Tom Renner, Ridgefield Daily Voice:. RIDGEFIELD, Conn. — Meg and Drew Whitbeck of Ridgefield reacted differently when they learned in February that their one-year-old son, Luke, suffered from a rare genetic disorder, Gaucher Disease. To visit the page. Feature: Lauren Shares Her Story with NGF. I’m La...
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Submit Your Story – Gaucher Stories
https://gaucherstories.wordpress.com/submit-your-story
Everyone's got a story. Share yours here! You do not have to have Gaucher Disease to submit a story. You can share the story of a family member or close friend that has it as well. If you would like to be featured on the site, please email me with your name, where you’re from, a picture, and your story. You may also choose to remain anonymous. Send stories and photos to: laurenedwards324@gmail.com. THERE IS NO SUCH THING AS A STORY THAT IS NOT GOOD OR INSPIRING ENOUGH! Carol Lees on Feature: Lauren’...
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laurenedwards20 – Gaucher Stories
https://gaucherstories.wordpress.com/author/laurenedwards20
Everyone's got a story. Share yours here! Feature: With A Warrior’s Heart, 2-Year-Old Ridgefield Boy Fights Rare Disease. December 21, 2016. December 21, 2016. Read more about Luke’s story. Written by Tom Renner, Ridgefield Daily Voice:. RIDGEFIELD, Conn. — Meg and Drew Whitbeck of Ridgefield reacted differently when they learned in February that their one-year-old son, Luke, suffered from a rare genetic disorder, Gaucher Disease. To visit the page. Feature: Lauren Shares Her Story with NGF. Last month t...
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Feature: Lauren’s Interview with Rare Disease Report – Gaucher Stories
https://gaucherstories.wordpress.com/2016/08/17/feature-laurens-interview-with-rare-disease-report/comment-page-1
Everyone's got a story. Share yours here! Feature: Lauren’s Interview with Rare Disease Report. August 17, 2016. August 23, 2016. It was an amazing opportunity to be able to sit down with Rare Disease Report to talk about my experience with Gaucher Disease, as well as to be recognized as the founder of. Though my platform is small right now, I will continue to use it to spread awareness because the more people know about it, the less misdiagnosis we will have. I’m Landon. This Is My Story. Feature: With ...
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I’m Yeyberth. This Is My Story. – Gaucher Stories
https://gaucherstories.wordpress.com/2016/04/11/im-yeyberth-this-is-my-story
Everyone's got a story. Share yours here! I’m Yeyberth. This Is My Story. April 11, 2016. April 11, 2016. I was only 5 years old when a doctor from J.M de Los Rios in Caracas, Venezuela discovered I had Gaucher type 1. I was always sick, had nose bleeds, bruises, fatigue and my stomach was huge. When I was younger, I fractured my left leg, the doctors didn’t know what was happening to me and why I was always sick. In June 9, 1997 my mom, my sister and I came to the United States of America. I was a p...
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November 2016 – Gaucher Stories
https://gaucherstories.wordpress.com/2016/11
Everyone's got a story. Share yours here! Feature: Lauren Shares Her Story with NGF. November 23, 2016. November 23, 2016. Last month the National Gaucher Foundation reached out to me with a few questions to answer for their new “Patient Journey” blog series. I shared some details in that post that you may not have known about already; I mention my incredible care team, the wonderful Gaucher family I have made online, and more! Please check it out and let me know your thoughts!
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I’m Yeyberth. This Is My Story. – Gaucher Stories
https://gaucherstories.wordpress.com/2016/04/11/im-yeyberth-this-is-my-story/comment-page-1
Everyone's got a story. Share yours here! I’m Yeyberth. This Is My Story. April 11, 2016. April 11, 2016. I was only 5 years old when a doctor from J.M de Los Rios in Caracas, Venezuela discovered I had Gaucher type 1. I was always sick, had nose bleeds, bruises, fatigue and my stomach was huge. When I was younger, I fractured my left leg, the doctors didn’t know what was happening to me and why I was always sick. In June 9, 1997 my mom, my sister and I came to the United States of America. I was a p...