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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Featured Member: Katie Haynes


KHaynes_BioPic.thumb.jpeg.21d7b712a8d4bd925d65840329082722.jpegDINET member name:  Katie Haynes
Katie's hometown:  Youngsville, NC
Diagnosis:  POTS, EDS, MCAS, AMPS (Amplified Musculoskeletal Pain Syndrome), IBS, Alopecia
Photography: https://www.facebook.com/KatieHaynesPhotography/
Smiling While Sending Hope: https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/
VOG project:  https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=563489880651949
Cambridge Mask project:  https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=589899214677682

In Katie's words...

A little bit about me: I’m 18 years old and I have POTS, EDS Type 3 and MCAS.and a few other illnesses.  I love photography and started my own photography business.  I also love sports, shooting, hunting, showing rabbits, crabbing and graphic design.  But my mission in life is to help other people. 

Helping others has been a big mission my whole life, even before getting sick, to make an impact on people’s lives.  I believe I do that by organizing toy drives, making comfort packages for local children’s hospitals, making awareness videos and my VOG and Cambridge Mask projects. Making an impact on others lives is what I love to do. I believe that this mission will continue to grow and continue to help many others in the near future!

Katie’s joy…..

I love to bring joy to kids and teens faces and make them feel at ease while they face big obstacles in their lives whether KHaynes_Reagan.thumb.jpg.1ab36ba7f90f3e9938f9269ebd841868.jpgthat be chemo, a transplant, or some other health challenges. I have done this project of toy drives on my own now for about 5 years. I also have sponsored local families in need of certain items. Along with that, in December of 2017, I launched a project where I send comfort packages and masks to people fighting chronic illness. I also created a facebook page to KHaynes_VOGProject.thumb.jpeg.ed017ecb9443b3413dff7168a3f237c3.jpeghelp grow my project in January of 2018.

I also give out packages and/or masks to the teens that I meet in the area and at the hospitals. This is my main long-term goal; to grow this and make it bigger each year. I find people’s stories that speak to me and share them in groups that I’m a part of.  And I send masks or packages to as many people as possible. Due to cost, I keep the packages that I give out mostly local, but I have mailed many masks and will continue to do so as funding allows.  I also keep it local because I like to meet each of the warriors in person and spend some time with them.  

What inspires Katie…..

I was inspired to start this to get involved about 7 years ago when Paxton, a little boy at my church, passed away. Not long after his passing, I helped with a toy drive called "Presents for Paxton" for UNC Hospital.

A few years later, I went camping and met a girl named Skyla Rippy who has a rare blood disorder called Diamond Black-Fan Anemia. We got to know each other very well, and now we are very good friends. When I found out that she was receiving care at hospital local to me, I started going with her to her appointments and began to do research on childhood illnesses/cancer. I then started workshops and presentations to share with others about what I had learned. I also became friends with kids I would meet at the hospital on social media and in real life.


My goal with this project is to bring smiles to people faces and to help spread awareness of so many illness and diseases. My goal is not to focus on the illness but to shine light and show healthy people not to judge others that may have an illness. They can do everything a well person can do. They just have to learn to adapt in certain ways.





Edited by edriscoll

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