Chasing a cure for Vascular Ehlers-Danlos Syndrome – Interview with D.A. Roach – author of Rarity
D.A. Roach’s story is also featured in Our Stories of Strength – Living with Ehlers-Danlos Syndrome
“Vascular Ehlers-Danlos Syndrome is a genetic condition caused by an alteration, also known as a mutation, in a gene called COL3A1. This gene is the instruction for making collagen type III. When this gene is altered it causes a lack or deficiency of this collagen. This leads making the connective tissue less effective, particularly in blood vessels, hollow organs and the skin.
Because many individuals with the vascular type of EDS are identified only after a severe complication of death, it is likely vascular EDS does not come to medical attention and therefore go undetected.
Latest figures suggest an estimated 700 in the UK are affected by vascular EDS, however less than 100 patients are registered on the NHS EDS Diagnostic Service database. The median life expectancy for those who have been diagnosed is 51.”
Above information borrowed from Annabelle’s challenge – a foundation dedicated to Vascular EDS awareness, research and treatment.
Interview with D.A. Roach – Author of Rarity
Tell me a little about your book:
“Rarity is more than a teenage love story/drama. Rarity deals with what happens when someone you love is diagnosed with a rare disorder. There are a lot of emotions that come into play when you have life-changing news and this book provides a glimpse into that world. Although it is a fiction story many of the events have happened to real people.
How long was the process of creating this book? (from first concept to published book)
It took a little over six months to pen it. It was first a self-published title. It was getting good reviews and a traditional publisher reached out to me and asked to publish my books. I did not publish with that company but did decide to submit it to Limitless Publishing and they offered me a contract.
Once it was contracted, it took about 2-3 months to get a new cover and edits completed. It was finally released with Limitless on June 16, 2015.”
What has been the biggest struggle in making this book come to life?
“Honestly, it wasn’t the writing process, though I did hit a writer’s block – it’s just been getting a book seen when there is a sea of books to choose from. I’ve found the best help is word of mouth and reviews. Unfortunately, many do not take the time to write reviews so it’s a true challenge.
The book was an easy story to write. I am friends with many that are challenged with VEDS and have heard their struggles. I could honestly fill a library with their stories – some are so devastating and others are so uplifting – but there are so many stories. I took my own emotions that I have felt since my son’s diagnosis (seen in Brogen) and weaved them into a series of events and let them organically grow into a novel.”
What have you enjoyed the most about creating this book?
“Hearing the effect it has had on people. Many have reached out to me thanking them for opening their eyes to this disorder and some readers with the disorder have messaged me and told me that they were grateful not only for the awareness I was bringing to VEDS but also for the hope the book carried. Messages like that mean the world to me.”
Do you have plans to create more books? If so, do you have your next one in mind?
“Yes! I am half way through penning my next novel. It’s YA but a bit different. I LOVE autumn and Halloween. I love horror films….always have. I wanted to write a story with a horror creature so I asked my daughter “ghost, vampire, werewolf, goblin, demon?” She said “Oooo Demon for sure. They are scary.”
So the next book is Between the Bleeding Willows and is about a 18 yr old girl who has lost her boyfriend in a car crash and now her sole caretaker, Gram has passed from a heart attack. Feeling lost she goes looking for a ring she lent her boyfriend that was unrecovered from the wreck. While searching the roadside, she hears sounds coming from the abandoned cemetery – a female voice calling for her dead boyfriend. She follows the path into the cemetery and she finds herself introduced to the world of demons and demon hunters. I’m having a lot of fun writing about it but it’s very different from Rarity. I have to create another realm, mystical creatures, and the rules that apply to this land. It has required a lot of pre-writing to ensure I don’t have holes in my story. Unfortunately, I don’t think it will be released in time for Halloween – but it’s not really scary – it’s more survival and a love story thrown in sp it can be read anytime.”
What was your biggest influence/support for your book?
“My 7 yo son. He was diagnosed 2 years ago with VEDS and I was devastated. I couldn’t find the good in life anymore – just the sorrow. I mourned the loss of his normal life, mourned the thought that he may never get the chance to grow old and have grandkids to hold and hug – he may not even have kids of his own, his future is that uncertain – his body so fragile. My husband said to me one day “I think I’ve lost you.” I knew what he meant. I was always bubbly and fun – always seeing the positive side of things. But that was gone.
His words were a wake up call. My son was still alive. I was still a mom, a wife, a daughter, a sister…life was not over and I needed to find a way to pick myself up and push forward. I made a bucket list of everything I could do to help him, so if anything went wrong, if his life was cut short one day, I would not beat myself up and say “I wish I would have…” On that bucket list I included “raise money for research and raise awareness of VEDS ” Rarity does both of those. It has an information section at the end of the book where people can read about symptoms and know what they should do next as far as seeking a diagnosis. I am donating half of the profits of Rarity to EDS Network C.A.R.E.S. to help fund research.”
If you won the lottery tomorrow and suddenly were $5,000,000 richer, what would you do with your money?
“I would be sure my family was first cared for financially and then I would donate the rest to researching a cure for VEDS. There has to be a better future for these patients.”
About D.A. Roach:
D.A. Roach is a YA fiction author that believes in true love, and she has been telling stories since she was a young girl in the suburbs of Chicago. In college D.A. Roach met the man of her dreams, her happily ever after, and married him 2 weeks after graduating. They have 3 kids together and a pet cockatiel named Gimli. D.A. did not find a love for books until after college. Her parents were immigrants from Lithuania and found tv and radio easier ways to hear stories so they did not do much reading or encourage it. But once she finished college and D.A. had free time, she discovered how amazing it was to get lost in a story.
D.A. is a full-time mom and wife. When she is not doing domestic things (laundry, bills, etc) she is writing, reading, creating mixed media art, raising awareness for VEDS, and helping beautify her kids’ school landscape. Her favorite authors include Rebecca Donovan, Richelle Mead, Larissa Ione, Stephanie Meyer, E.L. James, and Sylvia Day. Reading great works from authors like these has motivated D.A. to write her own stories. She hopes to make positive changes in the world with her art and writing.
D.A. Roach’s self-published titles can be found at Amazon.com and her latest will be published via Limitless Publishing!
D.A. Roach’s Website
D.A. Roach on Facebook
D.A. Roach on Twitter
Author D. A. Roach on Book Gorilla.com
Author D.A. Roach on Amazon
Rarity book trailer video
“Having a child that was diagnosed with a rare disorder, Vascular Ehlers-Danlos Syndrome, has been a life changing experience. One of the challenging aspects of being diagnosed with it is finding a support system, people with like minds who face similar challenges. We find support in online groups and within our personal family but outside of that, it can feel pretty isolating. Recently a book entitled Our Stories of Strength was released – it too has helped us feel not alone in our journey.“
I am a mom of a 7yr old who was diagnosed with vEDS. It is the rarest form of EDS and resembles Marfan’s syndrome & Loeys Dietz Syndrome in that it has a vascular component.
In vEDS, patients make good & faulty collagen but it’s estimated that they only have 15% good collagen floating around their cells. Patients usually experience their first major vascular event by age 20 (aneurysms, ruptures) and many have had spontaneous muscle ruptures, colon ruptures, etc. The average life span is 48 yrs but many die in their 20’s due to riskier behavior at that age & the stress of growing on the tissues, organs, & vessels.
One important way they differ from Marfan’s is that surgery can kill them. When vEDS patients go in for emergency surgery, their body goes into an inflammatory response (white blood cells increase, hormone levels change to help heal the wound) but this response has a negative effect on their body…surgeons report patients literally falling apart on the table, tissues becoming as fragile as wet toliet paper…and many die on the table especially if the surgeon was not anticipating this. So in one word…vEDS patients are FRAGILE.
As a mom, it’s hard to send your kid to school & get a call from the nurse that Jimmy pushed him off the slide & he has severe pain in his belly. I know I will soon be rushing to the ER, trying to convince the medical team he has a rare disorder that often has organ & vessels ruptures/tears & he needs to be scanned for injury & bleedouts. And if he needs surgery to​ repair it, his odds of making it are worse than a normal child.
I want him to not live in fear of dying, to not tell me every night “when I die…” He is so aware of how fragile his body is & he say “Mom, I’m trying my best to stay alive because the only thing that matters is survival.” 🙂 He’s got the kindest heart & is oddly enough the glue that holds our family together. (odd since he has the least amount of “glue” in his body).
So please consider vEDS as a disorder to treat with Crispr. There are so many that are in their mid-40’s, expecting to die at any moment & I’m sure any of the patients with this would love a chance to live life without this terrible disorder.
Additional resources and links for VEDS:
Emergency Information – Vascular Ehlers-Danlos Syndrome
VEDS 2015 presentation
Deborah’s VEDS presentation on video
EDS Network C.A.R.E.S.
Annabelle’s Challenge – VEDS Charity
Rarity give away!
- Like and Follow @EDSWellnessSol & @Strnger2Gether on Twitter or Facebook.
- Share this post (Facebook, Twitter, or both)
- Use contact form below and provide name, email and reason why you are interested in reading Rarity.
- Deadline is Wednesday, November 3rd, 2015.
- 3 winners will chosen.
- Winners will be announced on Thursday, November 4th, 2015.
- No purchase necessary, but winner must complete all steps.
- Each winner will receive a copy of Rarity, including free shipping!
[contact-form][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’Website’ type=’url’/][contact-field label=’Comment’ type=’textarea’ required=’1’/][/contact-form]