Thank you to all of our Zebras Got Talent entries for the 2020 Virtual Summer Conference. You can see a montage of all of our entries in the Zebras Got Talent video above. Alternatively, why not take a look at the entries in full in the section below.
Don’t forget to vote!
Voting closes at 4:10PM EDT on Sunday 12th July 2020.
Angela Schusse-Warren – Dance
Jada Ward – Music
Lizabeth Murphy – Painting
The importance of finding a supportive community while living with EDS is summed up in this painting. A multitude of stripes is coming directly at the viewer. Just as these stripes cannot be ignored, we cannot be ignored any longer. Just as each stripe is unique in color and size, each person with EDS is unique in symptoms and disorders. We are the EDS and HSD community. All of the warm stripes flow together, producing a strong effect. Although the storm clouds indicate difficult times ahead, the warmth and strength of the sea of stripes brings hope and unity; finding the beautiful blue water in such an environment brings healing.
After so many years of being ignored by the medical community or told the multisystemic issues were just psychological, we found the cause. Feeling confused and alone, we needed to find help from someone who understood. Not only did we find help, we found a community of many others with similar experiences. My daughters and I are so grateful for this support. By working together, we will increase awareness, change how EDS is perceived, and discover effective treatments for our chronic issues.
Kyan Shores – Drawing
This drawing shows and represents the feelings I have about EDS. For example I put the word scared because with this syndrome you have to be careful of getting cut or braking a bone making me scared every day. And I put the word strong because of all the times I have had to get stitches. And I put the word stretchy because of my elastic skin. Lastly the colors help you understand my feelings about each word.
Alexandra M.Krantz – Photography
A ZEBRA WARRIOR
She is a positive zebra warrior,
with no fear about her future.
She has a lot of support from her mother,
they have an amazing relationship living together.
She began to write articles about her life as zebra,
to follow her dream to bring awareness about EDS.
The zebra’s life obligates her to wear on her hands
splints and braces,
sometimes they limit her movements
and leave her unable to complete one of her normal tasks.
Another bad side of EDS is the Chronic Fatigue,
which always leaves her looking tired,
even after hours of sleep;
it can trigger her stress much more than a common person
who doesn’t have it,
and also breaks down her mental side.
Are there any nice sides?
All the zebras look younger than their real age,
thanks to their peculiar skin.
They are also very bendy and elastic,
but in the long run
it will give a lot pain;
It forces them to walk with supports,
a cane, crutches or a rollator
sometimes a wheelchair.
She doesn’t have a good proprioception,
this makes her walking often
for this reason she must always
wear orthopaedic shoes.
She is a strong Zebra who
believes no matter if you have EDS
open your eyes
life is not over.
Angeliki Tsioli – Photography
Born in Athens Greece, in 1978. I have studied agronomy and viticulture, while I also have a university degree in Enology. My strong points and passions have to do with wine, food, research and puzzles. I had a long journey to my diagnosis of EDS which ended up in 2018. Since then I am actively involved in bringing awareness about the EDS and my rare type, a biallelic mutation of the AEBP1 gene.
Kicki Samuelsson – Video Performance
My name is Kicki is 33 years old and live in Sweden.
I have EDS, visual impairment and some other diseases.
It took me over 18 years of fighting before I got my EDS diagnosis
EDS affects me very much daily.
To cope with the disease you need to do something you love and for me it is dogs.
I love to train and compete agility so last year I was the first Swedish ever to participate in the World Cup in para-agility!
It was an incredible experience to be able to represent Sweden in the World Cup!
On the movie you see me and my 6 year old Eurasier named Orino.
I think it is very important to do something you love to cope with everyday life
Never let anyone else decide what you can or can’t do!
Best regards from Sweden / Kicki
Laura Upchurch – Music
Stephanie Montero – Creative Writing
Here before this funhouse mirror,
Things are to me a little clearer.
This reflection is not surreal,
Because what I see is what I feel.
Every pain and every ache,
Every twist and every break;
This mirror shows me all that’s real,
Because what I see is what I feel.
Hannah Waldron – Creative Writing
People may not always be able to see our black and white stripes
Others may not be able to understand our triumphs and our fights
We deal with often debilitating chronic pain day in and day out
We may have to remind people that hypermobility isn’t that it’s all about
We may seem “normal” on the outside – and no one seems to see
That we desperately want a better life – a life where we can be free
We undergo surgeries, physical therapy, and don’t always like the final result
But we have to remind ourselves that no one deserves to live like this – that it’s not our fault
We may cry tears of frustration, anger, and sadness when things get tough
Sometimes we may want to just give in and yell “I’ve had enough!!”
People don’t seem to understand that we are trying our best to live as normal a life as possible
But we may need a reminder that our dreams may be high – but they aren’t impossible
We may not always like the hands we have been given
And we may feel powerless on how our lives have been driven
We have spent years searching for answers and begging for doctors to help
We’ve been told “it’s all in your head” so many times – maybe we begin to believe it our self
Unfortunately, for some of this community – help came too late
Many of us desperately want a diagnosis so we don’t receive the same fate
Sometimes we feel so lost in this world that we don’t know what to say
But, everyone know that if you need help dealing with your emotions – that’s totally okay
We may wheel our chairs or limp with crutches as we fight a war we battle
There are millions of us around this world – we are all a beautiful dazzle
We may feel alone sometimes – but we always have each other
Some of us may go as to say that we’re all sisters and brothers
“When you hear hoof beats – think horses not zebras” – is what some doctors say
If they took that saying to their heart – imagine how many zebras they could find someday
Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder may change our fate
But – remember – “we may be fragile – but we don’t break”
Shelly Marlow – Painting
Grace Castellano – Drawing
Jamal Whittaker – Painting
Nicola Pepe – Drawing
My hEDS accelerated from being ‘super bendy’ in childhood, with a propensity to dislocations and injuries, to being in constant pain by my early thirties. I was always subject to family frustration & disbelief in the way I would be allergic to ‘nothing’ and trip over fresh air. But I had a brother who died aged 10 from heart valve prolapse so I kept my ‘problems’ to myself so that I didn’t burden my parents further.
I became a teacher, but my hEDS made it impossible to continue as I was ill or injured so often. My diagnosis of hEDS came at this time after multiple dislocations and joint pain meant I saw a rheumatologist. I lived in denial for a while as my childhood habit of hiding my pain continued for quite a while. Eventually, as I declined in health I increased in acceptance and sought to learn and manage my condition as best as possible.
Since then my hands, arms & neck are the most severely affected. I usually have to splint my hands in fixed braces as I dislocated digits 20-50 times per day resulting in pain, arthritis & ruptured vessels.
Despite this I wanted to find purpose and fulfil my dreams. My two passions in life are dogs and art. So for as long as I can I produce artwork to raise funds and awareness to help retired service animals in my area and the whole of the U.K. I will. I’m hoping to produce a digital exhibition of all my pictures of service animals with the support of retired service animal charities. Some days I can hardly hold a pencil and sometimes I go weeks without being able to work on anything. But I get there eventually, each mark made is its own Everest conquered. Sometimes there’s tears for the person I was and sometimes for the anger & frustration of what I KNOW I can do versus the pace of what I can actually do.
I currently have to work on self-acceptance and communication of what hEDS means for me as I tend towards not telling anyone. I’ll get there too, but mostly I hope people enjoy my art for what it is and hope I can be an example of perseverance for anyone with chronic illness.
Jennifer Aucoin – Dance
Manuela Aristizabal – Cooking
Ruth Mutch – Drawing
Tina Rey – Painting
Rina Fleisch – Painting
Heather Field Ruggerio – Photography
My first inkling there may have been something wrong was when I was 8 years old. I don’t remember it much, but the orthopedic surgeon told my parents that moving my kneecap round to the sides of my knee by hand was ok and I would just grow into those loose ligaments. I also had been seen by GI with some abnormal ultrasounds but no one followed up on anything. All we knew was I was an accident-prone, frequently sick kid who fought to keep up with her peers and was not going to be left behind on any adventures. Come summer before high school and the abnormal became more obvious.
One night I had what presented as a stroke. After three days of testing, we found out it was my first migraine. Through high school more and more piled on. Several surgeries, fibromyalgia, reactions to many meds, asthma that wasn’t asthma, seizures that weren’t unconscious, more injuries than was typical, And doctors who didn’t understand or maybe didn’t want to. College continued with this trend with a TIA, atypical infections, the onset of Meniere’s, several more fractures, and more questions than answers but me more determined than ever to have a normal life.
It wasn’t until the year after college, when I had my daughter, that I got ill and a doctor sat me down and told me that perhaps what was wrong with me was connected and more serious than I had considered. That the individual pieces needed to be looked at as parts of one whole picture. He referred me to genetics for a condition he had heard about at a conference he thought I fit the profile for, which ends up not being my dx, but it led us to the right ones and to the right team of doctors. We had to work around my insurance to get to answers and will have to continue to find ways to get things covered. But for the first time, at 35, things I had endured my whole life started to make sense. We had a direction to head in and a purpose to our goals.