Living Well With Ehlers Danlos Syndrome.

Deep breath in, deep breath out. As the sweat drips down her face, her mind locks into concentration. She has forgotten about the camera in front of her and speaks directly from her heart, connecting to her audience. As her arms stretch across the yoga mat, she remains conscious that one wrong step can dislocate any joint in her body. Alert, but not afraid, she has made her connection with the universe. Silence is experienced for the first time in what seems like eternity and she feels her heart lighten.

 

Apart from when she is filming her yoga videos, a typical day for Kendra is buzzing with excitement. She has learned to structure this excitement around her diagnosis of Ehlers Danlos Syndrome. When Kendra was diagnosed with Ehlers Danlos syndrome at the age of 27, she was devastated. A terrible event had just occurred in her life, but rather than drowning in pity and frustration Kendra did just the opposite. Although a diagnosis of Ehlers Danlos syndrome was foreign to her, she never had a question in her mind in regards of how to react. Kendra reacted to her diagnosis with hope. She was able to fill herself with hope, and it became her mission to share that hope.

 

At the young age of 27, Kendra, a new mother faced the devastating diagnosis of Ehlers Danlos Syndrome. One of the key elements of her life was taken from her permanently — her health, her wellness. Even so, Kendra‘s reaction was produced without hesitation. Kendra did not fall into self pity, but instead she created a 501 c 3.

 

“My choice — being disabled at 27 year old didn’t feel right for me, and working, doing something, helps me manage my health and well-being.”

 

From the moment of her diagnosis, Kendra chose to remain in control of her situation. She wouldn’t give up on her health, or her wellness. Kendra adjusted her diet and exercise to fit her new situation and before long she was proving to be stronger than anyone knew. Five years post diagnosis, not only has Kendra established herself as an example for her three young sons to look up to, but Kendra has established herself as a role model in the chronic illness community. Kendra has an awful diagnosis, but she is so much more than her diagnosis. Since Kendra’s diagnosis, she has been busy changing the way the world sees chronic illness.

 

Just in case you were wondering what Kendra has accomplished,  here is the ‘small’ list:

Kendra has published and helped publish multiple books those of which include: Our Stories of Strength, Living with Ehlers-Danlos syndrome, Never Bet Against Occam Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence Afrin, M.D. Kendra has held seminars and conferences, organized fundraisers, embarked on other initiatives and projects. Most importantly Kendra wants the world to know that she did these things

 

“all with the same goal in mind — to serve the EDS and broader chronic illness community in whatever way that was best.”

 

Recently, Kendra has revamped her main website into a digital wellness magazine for those living with Hypermobility syndromes such as Ehlers Danlos Syndrome. She takes time out of her daily activities — time away from her own family to speak with doctors over the phone and help provide educational resources for doctors who don’t understand Hypermobility syndromes.

 

It has not been easy for Kendra to put herself out there, yet she continually does so with the utmost eloquence and grace. Perhaps the greatest burden her illness has given her is the burden of invisibility. Because she chooses to smile through her pain, her struggle is often misunderstood or unseen. Despite all the negativity, that Kendra has faced, she remains positive about her situation.

 

“I’ve had many people say pretty hurtful things, solely because I’ve chosen not to lament about my obstacles (for the most part) publicly. So, they don’t “see” what I deal with every day — they only know what I share and what I do. However, they also don’t know the story.”

 

Chronic illness can be like a cage and will keep you locked away if you let it. The thing is, you have the key to this cage. You can unlock your full potential if needed. Unlock the amazing capabilities of bravery and strength. Throughout the pain and suffering, Kendra has never left her community behind. She has never stopped raising awareness.

 

Kendra Myles will never let Ehlers Danlos Syndrome conquer her world.

 

Learn more about EDS Wellness.

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