Photograph courtesy of Michele L. Hopkins
Increasing Advocacy & Awareness
why it matters &
what we are doing to make a difference
"No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome." -Professor Rodney Grahame
"...until now." -Victoria Graham
who is affected by Ehlers-Danlos Syndrome?
The National Institute of Health (NIH) estimates that EDS affects about 1 in 5,000 people. This being said, it is also estimated that EDS is commonly under diagnosed and mis diagnosed, causing the estimated frequency to be skewed.
So, What is the problem?
A few things...
- Generally speaking, it often takes individuals anywhere from 1 year to 40 years to become diagnosed - despite the relatively high prevalence of occurrence
- Ehlers-Danlos patients are much different from individuals without the disease
- Many of our symptoms are different, often causing treatments to be different
- Ehlers-Danlos Syndrome is relatively unknown within the medical community and widely unheard of within general society
- The number of doctors who are proficient in dealing with Ehlers-Danlos Syndrome is limited
- Patients must encounter dozens of doctors before finding one who is able to properly treat them
- Many times patients must travel great distances to receive help
- There is, ultimately, no cure for EDS and there are very few treatments for the disease
What can be done?
Talk about it. Educate. Support.
In order to spark hope for patients with Ehlers-Danlos Syndrome, the first steps come in increasing advocacy and awareness about the disease; even simply discussing its existence, is beneficial and crucial.
Sara Kestenbaum, of Bryn Mawr in Pennsylvania, has generously chosen to raise awareness money for Ehlers-Danlos Syndrome, through The Zebra Network, and the StopConcussions Foundation for her Bat Mitzvah Fundraising Project.
On April 30th, she is hosted a carnival, complete with games, dancing, raffles, fun competitions, and more!!
On behalf of The Zebra Network, we would like to commend Sara on her selfless work and thank her for the great impact she is making in our community! We are so proud of you, Sara!
Tax-Deductible charitable gifts made through Sara's Bat Mitzvah fund raising to The Zebra Network can be made, here
Awareness on hollywood BLVD.
"Today, I stood for three hours and watched thousands of people mull around a busy mall. Today, I watched as 550 people read my signs, looked at me with judging eyes, and walked away. Today, I watched as a little girl tugged on her father's shirt pointing at me and said, "Daddy, what's that?" and I watched as her father quickly pulled away without saying a word.
Today, I watched people ignore my presence.
But at the same time, today, I talked to a hospice nurse about loving yourself, no matter what you're given. Today, two 13 year old girls stopped their shopping to ask me what was wrong. Today, a 21 year old boy confided in me that he was recently diagnosed with Bipolar Disorder, and was too scared to tell anyone. Today an older gentleman took my hands in his and prayed to God for me to have the strength to fight.
Today changed my life. And all I had to do was stand next to a sign"
-Cheyenne Adele Rose
Princesses with a Purpose
In June, four young zebras were crowned as Miss Maryland Princesses through the Miss Maryland and Miss America IMPACT program. Baeh, Olivia, Madelyn, and Hallen are being mentored by Miss White Oak 2016, Victoria Graham. The five, who each suffer from Ehlers-Danlos Syndrome, are working together to promote the platform: "But You Don't Look Sick" - Making Invisible Illnesses Visible.
Despite their personal battles, these girls are working to show that Ehlers-Danlos Syndrome, and any Invisible Illness, does not have to define one's life. We can still achieve success and happiness despite a diagnosis.
"Imgur Diagnosed me... with Ehlers-Danlos Syndrome"
In May, Cheyenne Adele Rose came upon the diagnosis of Ehlers-Danlos Syndrome after presenting her debilitating symptoms on the internet site, Imgur. Her story struck the internet and her tenacity and refusal to give up has inspired thousands across the world.
This rare occurrence just goes to show the power of the internet, but more importantly, the heart behind those with Ehlers-Danlos Syndrome.
Read about it, here: http://www.dailydot.com/irl/imgur-rare-disease-diagnosed-woman/
Never Give Up
After losing the ability to dance, Rachael Wilson, a 19 year old from Kentucky, is working to turn the negatives of her life into positives. She has created a group entitled, "EDS Awareness: Hope, Inspiration, Education" where she works to bring awareness to Ehlers-Danlos Syndrome.
During EDS awareness month, she released an inspirational interpretive dance to the well known, "Fight Song" by Rachel Platten. See our Rachael's Fight song, above and here: https://www.youtube.com/watch?v=d8x8ptcn_vo&feature=youtu.be
EDS Awareness: Hope Inspiration Education
Creation of the Zebra Network
With much help from the Players' Philanthropy Fund, in April 2016, Victoria Graham filed and founded The Zebra Network to become a recognized non-profit organization with 501(c)(3) status.
Here Victoria is pictured with Brandon Warehime, marketing and business development at PPF, in the Players' Philanthropy Fund office with the ink still drying from the contract!
Read about it in the Players' Philanthropy Fund June E-Newsletter, here: http://us12.campaign-archive1.com/?u=184ea7725ab8b06845315dd03&id=0aa499aea1
Welcome to My world
Despite having Ehlers-Danlos Syndrome and a basket of other medical complications, Massachusetts native Christina Doherty is determined to make the best of her situation.
Even after several surgeries and medical procedures, even forcing her to relearn how to walk, Christina is using her voice and abilities to educate others about Ehlers-Danlos Syndrome. She hosts a YouTube channel that gives a glimpse into the realities of EDS and educates others about the disease.
Watch her video, "A Day In My Life," here: https://www.youtube.com/watch?v=FjbbdPtBZGI
Speaking out about Rare Diseases on a Rare Day
On February 29th, leap day, Victoria was featured on Fox45 Baltimore to discuss her journey with Ehlers-Danlos Syndrome and what she is doing to combat and overcome the disease.
To date, this video of the interview, posted on the Victoria's Warriors page has had over 70 Facebook shares and reached over 14k people!