Jennifer's Ride London page
Jennifer Harmon is raising money for Ehlers-Danlos Support UK
Participants: Diederik Olijslager
Story
Thanks for taking the time to visit my JustGiving page.
I was diagnosed in 2017 after experiencing symptoms for virtually my entire life. I live with Hypermobile Ehlers-Danlos, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Disorder. Most of my body’s systems are affected in one way or another by these conditions.
In 2018, my symptoms finally escalated so badly I was faced with the need to resign from my career. I've tried countless treatments and medicines, each leading to more symptoms and reactions. At the advice of multiple specialists, I began to increase endurance exercise to help manage my autonomic system and to build strength so that my muscles can do the job my connective tissues cannot. My list of safe-foods is a fraction of those that I’ll have an allergic reaction to, so I have become quite a creative cook. I never imagined I would be so limited, but on the plus side, I have learned so much and even influenced my family to embrace more plants.
I feel my best when I'm training and regularly exercising. I enjoy partaking in sport events where I am always amazed and inspired by others. These events also provide an incentive to be active, even on days where it is hard to get out of bed.
More awareness of Ehlers-Danlos, both in society and in the medical world would have helped me be diagnosed much sooner. I had many of the typical signs as a young child; yet was not diagnosed until 35. I am fortunate to have been active most of my life and to have maintained muscle, which has limited my need for mobility devices to date (although if I go too long neglecting exercise, I am known to need a cane). I will continue to work daily toward maintaining and building my body’s defenses.
When we saw the opportunity to Ride London and support EDS-UK, it was a no-brainer. Diederik has ties to London from Graduate School and has wanted to say, "Thank you" for the care his late-father received there. We are honored to add the Ride London 100 to our list of events in 2019. If you have read this far, THANK YOU. If you are willing to give (even $1.00) you are inspiring and offer hope for the future. You drive me to be a better person and I thank you for supporting us.
Sharing my story is difficult for me, and I realize I have been a bit vague. I've always been a very private person, which I believe may have contributed to the lack of diagnoses for so many years. I thought everyone experienced my symptoms and my pain. I did not realize what should have been "normal".
I also realize that "I don't look sick". People are often confused that I can require a cane one day and then be able to complete a 70.3 triathlon a few weeks later. I am working on opening up, just as I am still working on accepting these diagnoses and accepting my new lifestyle. I hope that I can inspire others, not only with EDS, to embrace movement as a viable treatment. It has saved my life; it is my medicine.
I'd love to chat with you more if you have questions or just want to know more. Instagram: @alwaystrijenn
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
I was diagnosed in 2017 after experiencing symptoms for virtually my entire life. I live with Hypermobile Ehlers-Danlos, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Disorder. Most of my body’s systems are affected in one way or another by these conditions.
In 2018, my symptoms finally escalated so badly I was faced with the need to resign from my career. I've tried countless treatments and medicines, each leading to more symptoms and reactions. At the advice of multiple specialists, I began to increase endurance exercise to help manage my autonomic system and to build strength so that my muscles can do the job my connective tissues cannot. My list of safe-foods is a fraction of those that I’ll have an allergic reaction to, so I have become quite a creative cook. I never imagined I would be so limited, but on the plus side, I have learned so much and even influenced my family to embrace more plants.
I feel my best when I'm training and regularly exercising. I enjoy partaking in sport events where I am always amazed and inspired by others. These events also provide an incentive to be active, even on days where it is hard to get out of bed.
More awareness of Ehlers-Danlos, both in society and in the medical world would have helped me be diagnosed much sooner. I had many of the typical signs as a young child; yet was not diagnosed until 35. I am fortunate to have been active most of my life and to have maintained muscle, which has limited my need for mobility devices to date (although if I go too long neglecting exercise, I am known to need a cane). I will continue to work daily toward maintaining and building my body’s defenses.
When we saw the opportunity to Ride London and support EDS-UK, it was a no-brainer. Diederik has ties to London from Graduate School and has wanted to say, "Thank you" for the care his late-father received there. We are honored to add the Ride London 100 to our list of events in 2019. If you have read this far, THANK YOU. If you are willing to give (even $1.00) you are inspiring and offer hope for the future. You drive me to be a better person and I thank you for supporting us.
Sharing my story is difficult for me, and I realize I have been a bit vague. I've always been a very private person, which I believe may have contributed to the lack of diagnoses for so many years. I thought everyone experienced my symptoms and my pain. I did not realize what should have been "normal".
I also realize that "I don't look sick". People are often confused that I can require a cane one day and then be able to complete a 70.3 triathlon a few weeks later. I am working on opening up, just as I am still working on accepting these diagnoses and accepting my new lifestyle. I hope that I can inspire others, not only with EDS, to embrace movement as a viable treatment. It has saved my life; it is my medicine.
I'd love to chat with you more if you have questions or just want to know more. Instagram: @alwaystrijenn
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.