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Maybelle Dawson longs for normalcy and belonging. Often misunderstood, she struggles with a rare disorder, labeling her a Medical Zebra.
Maybelle’s happiness and well-being threaten to slip through her fingers as she battles to take control of her life. She faces a never-ending battle on her journey to find love, courage and friendship in a world lacking acceptance.
With the guidance of her guardian angel, Maybelle finds her way out of emotional and physical isolation to discover lasting love and amazing friendships.
A Zebra Like Me is the story of one teenager’s battle with Ehlers-Danlos Syndrome, a disorder affecting one in five thousand people.
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About the Author
Amy Maurer Jones has been happily married to her own version of Edward Cullen for sixteen years. She lives in the small town of Tabor City, North Carolina (close to the North and South Carolina shore) with her husband Kelly and their two beautiful children, Olivia and Keaton.
Amy loves reading and writing Young Adult because she finds young people inspiring. She appreciates how teens are able to look at the world with a fresh perspective and willingly open their minds to the endless possibilities that life has to offer. She particularly enjoys writing strong heroines who face problems head on, learn, grow and mature into the type of people who do the right thing.
When Amy isn't reading and writing, she teaches high school theater arts and dance. To say that Amy has a flare for all things creative would be an understatement, just don't ask her to assemble anything that requires instructions or sadly, you will be out of luck!
Favorite quote:
"You are unique, and if that is not fulfilled, then something has been lost." ~ Martha Graham
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Author's Note
A Zebra Like Me is a work of fiction
but Ehlers-Danlos Syndrome and the message in this story are very real. I have
EDS and I’ve learned to live with this disease. Sadly, much of my battle has
been seeking compassion and finding acceptance from those who don’t understand
it. My mission in publishing this book is two-fold.
1 – Awareness – I aim to educate people about
Ehlers-Danlos Syndrome. I’m a teacher and through my teaching I’ve learned the
best lessons are learned in unexpected ways. I hope my readers will gain a better understanding of this disease
through the fictional world I created for Maybelle. There are people like her
all over the world. Some EDS patients’ symptoms are less severe than
Maybelle’s, some are worse. You may know someone with EDS and not even realize
it.
2 – Self Empowerment – I want other people with EDS
to know they are not alone. There are support groups and resources online that
can help you learn how to cope with this disease. Don’t give up on a normal
life. Learn how to avoid injuries and the external hazards that trigger your
issues. Find hobbies that are safe, fun, and relieve stress. Surround yourself
with positive people and avoid or tune out the people who can’t or won’t
support you. Take care of yourself, physically, mentally, and emotionally.
Need Help? The Ehlers-Danlos
National Foundation is just a click away.
Fast Facts about
Ehlers-Danlos Syndrome
“Individuals with EDS have a defect in their connective tissue,
the tissue that provides support to many body parts such as the skin, muscles
and ligaments.”
“The
fragile skin and unstable joints found in EDS are the result of faulty
collagen. Collagen is a protein, which acts as a “glue” in the body, adding
strength and elasticity to connective tissue.”
“There
are six major types of EDS, each classified according to their manifestations
of signs and symptoms.”
“Clinical
manifestations of EDS are most often joint and skin related and may include: joint hypermobility; loose/unstable
joints prone to dislocation and/or subluxation; joint pain; early onset of
osteoarthritis, fragile skin that tears or bruises easily, slow and poor wound
healing and much more.”
“EDS
can also be associated with rare and/or serious conditions such as tethered
cord, cervical cranial instability, cranial settling, dural ectasia and chiari
malformation.”
“In
many cases those with EDS do not respond to local anesthetic properly or at
all. This may mean complete failure of the anesthetic to freeze the intended
area, a much lower amount of numbness, or a much shorter duration of effect.”
“EDS
is an autosomal dominant genetic disorder (apart from types 6 and 7C) meaning
if a parent has the disorder they have a 50/50 percent chance of passing it
onto each child they have. Not everyone with EDS inherits the disorder from a
parent. It is estimated that about half of those with EDS received it via
what’s known as ‘spontaneous mutation’.”
“Currently
EDS is estimated to occur in 1 out of every 5000 births worldwide, equally effecting
men and women of every race and ethnicity.”
“Possible
dental manifestations of EDS include a high palate, crowded teeth, gum disease
and hypermobile tongue. Those with EDS are also more prone to cavities as well
as weakness of both the enamel and tooth roots.”
“EDS
can cause chronic debilitating pain throughout the entire body. Whether from
chronic, repeated joint subluxations and dislocations or degenerative joint
disease, this is often easily the most difficult aspect of daily life with
EDS.”
“EDS can cause several gastrointestinal complications with one of
the more serious being gastroparesis (partial paralysis of the stomach). This
condition causes food to remain in the stomach for longer than normal,
preventing the stomach from emptying entirely.”
“EDS
carries many of the same and/or similar symptoms of several other genetic
connective tissue disorders such as Marfan Syndrome and Loeys-Dietz Syndrome.
It is not uncommon to have what appears to be a mix of more than one tissue
disorder or for your diagnosis to change later in life from one to the other as
more symptoms appear and more is learned about these conditions.”
“EDS
can affect endless parts of the body, but has ‘variable expression,’ so each
person is affected differently, even within the same family. While there are
features that are frequently seen in many people with the disorder not all
people will exhibit these features.”
“Connective
tissue can surprisingly also be found in the bones and blood as well as being
the glue that holds the body together inside and out. Collagen alone is found
in tendons, ligaments, skin, the cornea, cartilage, bone, blood vessels, the
gut, and intervertebral discs. All of this helps explain the endless possible
complications and outcomes of EDS.”
