Being Built Wrong One Woman’s Struggle with EhlersDanlos Syndrome eBook Alexa Simmons
Download As PDF : Being Built Wrong One Woman’s Struggle with EhlersDanlos Syndrome eBook Alexa Simmons 
The following story was written in 2010 by my daughter Alexa who passed away on October 11 2011 from complications due to Ehlers-Danlos Syndrome (EDS). Most people do not even know that EDS exists and, for that matter, most doctors unfortunately do not understand it and often diagnose it as a psychiatric issue versus a disease/illness. I hope this story increases awareness of EDS and related disorders – perhaps it will inspire people to understand that many diseases are not observable and that they need to be more compassionate towards others.
Being Built Wrong One Woman’s Struggle with EhlersDanlos Syndrome eBook Alexa Simmons
I have EDS, though it is "officially" undiagnosed. 2 daughters have it, as well as my dad and grandmother.If it sounds in this book like an exhausting journey for the parents, I can testify it to be true. My daughter, now 20, struggled/struggles with the same tiring journey - treks to Drs., medication nightmares, "truancy" accusations, pain, surgeries, fainting, orthopedic issues, ................................
She recently started college after spending 1 year off sick. During that time she focused on 'beating' this illness through insanely healthy eating, clever exercise regimes, and mindfulness.
Her 1st few weeks at college have been exactly what she is meant to experience at her age. She has amazing girlfriends and is really living! Alexa's story reminds me how GRATEFUL I am for every good day my daughter has. My joy is indescribable when I see a new smiling Facebook photo. While I am so hopeful for her continued wellness, I am humbly reminded that this disease is unpredictable. I also know that she has become a strong, resourceful woman who will handle whatever comes at her with strength and courage.
Thank you, Alexa for writing such a nice read. It has the potential to awaken awareness of this crazy disease that has been ignored for centuries. You have done a wonderful job presenting your very real journey.
My prayers are also with you, Alexa's parents and sister. Always remember that you have been the best parents/advocates/nurturers Alexa could have asked for, so please let those thoughts fill you with strength and hope every day.
Product details
|
Tags : Buy Being Built Wrong: One Woman's Struggle with Ehlers-Danlos Syndrome: Read 5 Kindle Store Reviews - Amazon.com,ebook,Alexa Simmons,Being Built Wrong: One Woman’s Struggle with Ehlers-Danlos Syndrome,BIOGRAPHY & AUTOBIOGRAPHY Personal Memoirs,HEALTH & FITNESS Diseases General
People also read other books :
- Ascian and the Portal of The Tribes Realm Tribes Realm Series Book 1 edition by Ronnan Tristan Literature Fiction eBooks
- He Who Must Be Obeid The Untold Story eBook Kate McClymont Linton Besser
- The Dragon Masters eBook Jack Vance
- Fright Feast III eBook Brian James Lane
- Finding Frank eBook Buzz Ponce
Being Built Wrong One Woman’s Struggle with EhlersDanlos Syndrome eBook Alexa Simmons Reviews
Very sad that doctors don't know more about this condition
I knew this girl online. Lexi had a heart of gold, alas she had a body that just could not hold that heart. The essay she wrote - includes a lot of technical medical terms - terms that the community of chronic illness may be familiar with - but others will have to look up. It's worth reading tho.
Sweet Alexa - she is so missed.
EDS is a horrible life. It comes with mourning the loss of everything you perhaps "thought" your life might be. Alexa gives a great play by play about her life, her medical trials and failures, and her perseverance. For anyone with EDS, you must know they (we) are fighters. I am confident Alexa fought till the bitter end and my prayer is that every doctor who tried to solve her "mystery," her flawed body, now fights harder for their future patients and those they encounter with EDS and the party of other issues it brings with it.
This book might not be written perfectly. There may be a few little editing errors here and there, but the story has so much heart and definitely touched me. I too have EDS and while I luckily haven't been through as much as Alexa went through medically, I probably easily could have been. I share many of the subset of problems related to EDS that Alexa dealt with as well. It is a hard life for anyone, but especially for the young.
I was left wondering what happened to Alexa? The book doesn't say how she passed away and I am curious why she died at such a young age. It didn't sound like she had vascular EDS, which is the most deadly kind, but perhaps she contracted another infection? I myself have fought MRSA several times, as well as C Diff, so I know how dangerous they can be.
Maranda Russell/Author & Blogger
I have EDS, though it is "officially" undiagnosed. 2 daughters have it, as well as my dad and grandmother.
If it sounds in this book like an exhausting journey for the parents, I can testify it to be true. My daughter, now 20, struggled/struggles with the same tiring journey - treks to Drs., medication nightmares, "truancy" accusations, pain, surgeries, fainting, orthopedic issues, ................................
She recently started college after spending 1 year off sick. During that time she focused on 'beating' this illness through insanely healthy eating, clever exercise regimes, and mindfulness.
Her 1st few weeks at college have been exactly what she is meant to experience at her age. She has amazing girlfriends and is really living! Alexa's story reminds me how GRATEFUL I am for every good day my daughter has. My joy is indescribable when I see a new smiling Facebook photo. While I am so hopeful for her continued wellness, I am humbly reminded that this disease is unpredictable. I also know that she has become a strong, resourceful woman who will handle whatever comes at her with strength and courage.
Thank you, Alexa for writing such a nice read. It has the potential to awaken awareness of this crazy disease that has been ignored for centuries. You have done a wonderful job presenting your very real journey.
My prayers are also with you, Alexa's parents and sister. Always remember that you have been the best parents/advocates/nurturers Alexa could have asked for, so please let those thoughts fill you with strength and hope every day.
0 Response to "≫ Descargar Free Being Built Wrong One Woman’s Struggle with EhlersDanlos Syndrome eBook Alexa Simmons"
Post a Comment