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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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Review
Maybelle Dawson is a teenager yearning for a normal life while struggling with Ehlers-Danlos Syndrome, a rare disease that can manifest in many ways including chronic pain and illness. She wants friendship and love based on who she is and not what she suffers from, a life without pity.
When Malach, the new kid in town, shows a genuine interest in being her friend, Maybelle is thrilled. Plus, there's the boy next door, Nick--a boy that's known her forever, but is suddenly seeing her in a new light. She's even making new friends. But just as she's enjoying some normalcy, including a memorable Homecoming night, she suffers another blow. Will she ever have the life she's always dreamed about?
This book really touched me. It's hard for any teenager to define themselves. Even harder when they have a condition that brands them before they can figure it out. Then add to that missing school for flare ups and symptoms. Maybelle is fortunate to have her mother and cousin fighting for her, as well as Nick and Malach. But even her grandmother, who clearly loves Maybelle, struggles to understand what she goes through and why she can't simply overcome it.
At its heart, A Zebra Like Me is a poignant story about wanting to fit in and be loved--something we can all relate to. It's also about learning to love yourself and accept what you cannot change, to live within the parameters of your path while still enjoying the beautiful journey of life. Maybelle's story is touching, but empowering.
As if that wasn't enough, there's a sweet romance. What I loved most about it is that it develops slowly with charm and understanding. There are so many wonderful elements to this book, no doubt enriched by the author's own struggle with the disease.
I highly recommend A Zebra Like Me to readers who appreciate a story with emotional depth; one that will touch your heart in many ways.
Rating: 4.5 stars
About the Author
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
Links:
Website
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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.”
References: http://connectivetissuedisorders.wordpress.com/ and www.ednf.org
Note: I received a complimentary copy for review purposes. A positive review was not requested or guaranteed; the opinions expressed are my own.
