Tales from the Graves’ book:Thyroid patient stories

“I felt so alone and uninformed when I was diagnosed…I don’t want other people to feel that way.” – Ashli S., Graves’ sufferer

If there is any statement that sums up the purpose of “Tales from the Graves’”, this is it. So little is known publicly about this autoimmune disorder, and the disruption it can cause on the lives of everyday people. When it’s diagnosed, it’s a scary, amorphous unknown specter with an ominous name that implies going to the grave. There are made-for-TV movies for cancer and AIDS, and telethons for muscular dystrophy, so the public is well-aware of these inflictions – not so for autoimmune disorders.

According to Medscape in December 2013–a web resource for physicians and other health professionals–Graves’ Disease affects up to two percent of the female population, sometimes appears after childbirth, and has a female:male incidence of 7:1 to 8:1. It occurs most often in middle age (most commonly in the third to fifth decades of life), but is not uncommon in adolescents, during pregnancy, during menopause, or in people over age fifty. There is a marked family preponderance, which has led to speculation that there may be a genetic component. Graves’ currently affects approximately two hundred million people worldwide, three million in the United States alone. In other words, it’s very likely that a great number of people are impacted directly by this disorder (or related disorders, such as Hashimoto’s Disease, Thyroid Storm or the Thyroid Eye Disease), or through friends and family, that would be interested in this material.

Britney Robinson—co-author of this work, through suffering from Graves’ Disease for over 13 years now, has taken great pains to learn everything about this disorder in an effort to minimize its impact on her life and general well-being. In doing so, she joined a support group on Facebook for others to share their experiences–when she joined there were about fifty members. Within a year, that number has blossomed to over a thousand with more people asking to join daily. When she proposed compiling anecdotes into a book, over one hundred and twenty of these members jumped at the chance to share their stories in the hopes of telling others that they are not alone. Realizing the potential of this book to blossom into a huge project, Britney enlisted the aid of her husband, Ray Robinson. Ray is an experienced writer, having put together stories for multiple newspapers and blogs over his career.

This guide will begin with a basic description of Graves’ Disease itself–its origins, signs and symptoms, and diagnosis. Many of the contributors will give their own experiences in what first clued them or their doctors in. You will hear, straight from their own words, their advice on pursuing a diagnosis, finding a doctor that actually knows what Graves’ is (it’s more difficult than you would think!), and the tests they experienced to achieve the correct diagnosis. Special attention will be paid to treatment methods people have attempted (with varying degrees of success), how to stay positive in the midst of a complete life upheaval, and dealing with some of the more noticeable traits–such Thyroid Eye Disease (TED) that can occur in those suffering.

The truly moving draw of this material comes from reading the stories directly from people dealing with, suffering through, and overcoming this disorder. Many don’t mince words–since this is a harsh disease, you will get a real feel for the emotions they pour out. And never the same story twice! You will read REAL tales of lives turned upside down, friends lost and gained, frustration and elation, despair, fear, anxiety and jubilation.

“Tales from the Graves'” is an excellent guide for not only those suffering from thyroid diseases, but for their friends and family to gain understanding, and learn what they can do or say to help.

I am truly proud to have been privileged to hear so many stories from other thyroid patients, I hope I have done justice to their trust, and can help many others see a glimpse into our lives. Thank you to all of them and to my husband Ray Robinson for his help in compiling and writing this book.

Available for Pre-order from now until March 30, 2015, then available for purchase on Kindle platform. Get your copy here!

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Thyroid Related Projects You Can Help Support

There are a number of projects out there that are focused on either thyroid advocacy, patient financial help, information to help a thyroid patient, and even support groups. I wanted to share some I think should be spotlighted if you want to learn, and/or help these causes out.

First one is a lady with Graves’ disease who is doing a documentary about her struggle with thyroid disease, chronic illness and the often corrupt medical establishment that has prevented her from getting the care she has needed at times. Maggie Hadleigh-West from her website “has been internationally recognized as an activist, independent filmmaker, public speaker and the founder of the corporation, Film Fatale. She has been writing, directing and producing in film and television since 1991.”

Check out her kickstarter campaign to find out their goals and how you can help get this film off the ground.  Also here is a short video of the trailer for “Sick To Death”
https://www.kickstarter.com/projects/827276483/sick-to-death/widget/video.html

Another cause is a new project called Butterfly Nation Project. “Butterfly Nation Project is a patient helping patient group, bringing awareness, advocacy and support.” They are excited to have received their 501 (3) c status and are about to launch their website. This is a brand new thyroid advocacy and financial help group that is working to help raise funds to alleviate financial problems of thyroid sufferers, as thyroid disease is usually a chronic, lifelong condition for most people. I first started working with the founder Gina Lopes several years ago in her Facebook support group for Graves’ disease. Over several years she grew the group to over 3,000 members and it is now one of the most well known Graves’ disease support groups. She and several others with Graves disease have seen the need for help with medication, thyroid procedures, doctor visits that people with thyroid disease struggle with and is now trying to make a difference. I was just asked to be a board member so I could help share the group’s mission and bring awareness of this good cause.
You can find out more about Butterfly Nation Project at their open Facebook group Butterfly Nation Project or on Twitter at @ButtrflyNatProj to keep updated on their progress. If you would like to make a donation, even a dollar would help them to help other thyroid patients.  If you would like to send a donation you can either mail it to Butterflly Nation Project P.O. Box 667 Fountain, CO 80817 or via pay pal ButterflyNationProject@yahoo.com. They also have a CafePress online store, in case you would like to help support them while obtaining thyroid related merchandise for yourself at http://www.cafepress.com/butterflynationproject.
There is another group that is near and dear to my heart. Warrior Butterflies. After spending time listening and helping people online in Facebook support groups, and talking to people from all over the world who have been dealing with thyroid disease, I decided to join forces with a wonderful group of women and try to build a website where a person with thyroid disease could go and get diverse information to help them deal with their condition. Since thyroid disease is not a one size fits all issue, many different approaches can help people. Our group’s goal is to seek out reputable information in diet, therapy, scientific information and general support to help people find what works for themselves. To further this we have created the website http://www.WarriorButterflies.com. We have created a place for people to recommend good thyroid health care resources, a place for healthy recipes for different dietary needs, a place to list and read about local thyroid related events, local thyroid support groups and many other resources that may help someone deal with their thyroid disease.

Our group consists of myself (Graves’ disease, leader of Thyroid Tribe Support Group), Audra Stevenson (thyroid cancer survivor and very knowledgeable of vitamins and supplements), Jackie Bacom Stone (Graves’ and Hashimoto’s disease with Celiacs), and Penny Jenson (Hashimoto’s disease and leader of Hashimoto’s Social Butterflies support group). Together our diverse situations and backgrounds have allowed us to create a gradually evolving website with many different thyroid related resources. We are currently looking for people’s recommendations on any health care provider who has helped them in their thyroid journey including mental health counselors, chiropractors, acupuncturists, endocrinologists etc. within the US, Canada or Australia. We also welcome submissions of local thyroid related events, or webinars for people to learn more. Local thyroid support groups are also welcome to submit their information for others to see, and finally any healthy recipes they have tested are welcome for submission as well. A fee is never charged to add an event, recipe, doctor, etc to the website. You can send submissions to Info@WarriorButterflies.com and you can check out our website http://www.WarriorButterflies.com or follow us on Twitter @WarriorBtrflies.

Several really good Facebook Support groups are also out there if you need to talk to others in your situation:
Thyroid Tribe (Closed General Thyroid support group-small and informal)
Hashimoto’s Social Butterflies (Closed Thyroid support group)
Graves’ Disease, what everyone should know(Closed Graves’ disease only support group, 3k members)

If you know of any thyroid related projects going on that need recognition, please comment or send to me, and I’ll see about getting the word out.