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.
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. www.ednf.org
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
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