My story is no different from most of us in the AutoimmuneMom community. After I was diagnosed with pleva, a rare autoimmune skin condition and Hashimoto’s in 2009, I felt lost and unsure what was next. Doctors undersold the impact on my life and that of my family’s, saying my conditions would be treated the same as the non-autoimmune version, in the case of the Hashimoto’s. So I was of course surprised when adding a thyroid hormone to my daily routine did very little to change the all-too-familiar fatigue and other common symptoms. The biggest challenge in learning to live a full life with autoimmune conditions is (1) helping others understand since “you don’t look sick” and (2) finding an empathic, knowledgeable health care team. Out of that frustration, AutoimmuneMom.com was born.
The website is now two years old (a toddler!) and the group that has gathered around is all that I hoped it would be. I have met so many amazing women, online and offline.
One of them, who I just met in the last month, is Dr. Bonnie Feldman. Dr. Bonnie or DrBonnie360, her more well-known online handle, is a dentist turned Wall Street analyst after she went back to get an MBA. She has the ear of big health care companies and is a national speaker. AND with autoimmune disease in her family, she’s on an autoimmune mission just like ours — reducing diagnosis times and advocating for autoimmune health teams and/or clinics that are made up of functional medicine physicians and specialists in diet and stress reduction support (wouldn’t that be amazing under one roof!?).
So naturally when she contacted me, I asked what I could do to help. This is where you all come in. DrBonnie360 is looking for multiple autoimmune condition patient voices to add to her next major speaking cycle. If you are interested in sharing your story related to the difficulty of diagnosis and ongoing treatment, I would be so grateful. You can contact DrBonnie360 directly: [email protected]
I also wanted to give kudos to DrBonnie360’s inspiring and helpful writings. Her infographic, below, is published on Greatist.com, and she has two great videos on YouTube: Lonely Voice of Autoimmune Disease and Bringing Hope to Autoimmune Disease.
About the Author
Katie Cleary is founder of AutoimmuneMom.com. She lives with three autoimmune conditions, her husband, kids and mini labradoodle dog in Austin, Texas.
This blog post was originally published by AutoimmuneMom.com, written by Katie Cleary, and first published on Nov 11, 2014.