FD Warrior's Newsletter

Life gets hard. We all know that, but I'm lucky to have found such a great supportive community. Shout out to my fellow FD Warriors for their love and support over the last few years! I appreciate it more than they know. 

Want to give a shoutout to someone who's made a difference in your life? Send me an email here: skyemiusteppe@gmail.com

Featured Warrior:

My life started much like any other, running, playing etc. Around the age of four years however things would change, beginning with a series of minor accidents in which I broke my legs. Ordinarily such falls would only result in bumps, bruises and the occasional scraped knee or elbow, not broken bones. Eventually, I was diagnosed with McCune Albright Syndrome, a form of Fibrous Dysplasia. So began a whirlwind journey through more broken bones, seemingly endless reconstructive surgeries, struggles with depression, anxiety and rage, and most significantly to me, the total loss of vision, all related to the FD/MAS.

Though difficult, I like to hope McCune Albright Syndrome has made me a stronger and more understanding person. I cannot say what future challenges it will throw at me, but I am thankful for it as it's brought me to a life I would not otherwise have been able to experience. Most of the people I love, the things about myself I appreciate and my growing career as an author, are gifts I would never have had without MAS and FD.

 
My Website

Want your story featured? Send me an email including your story and a picture: skyemiusteppe@gmail.com

How I Accepted My Facial Asymmetry

Facial imperfections are common, and, in fact, likely universal, but, in a culture where symmetry means beauty, I feel like I stand out. Some people have slightly crooked smiles that make them look mischievous, but my smile is so crooked that my pediatrician once sent me to the hospital because she thought I was having a stroke.

The Beginning of My Journey With My Son's Rare Disease Diagnosis

Dear Meg, Wow, you just took four kids to the doctor's office by yourself. You go girl! That's no easy task! You have the cutest little 2-week-old ever. You don't know this yet, but time is about to fly like it has never flown before. I wish I could warn you.

Get Involved:

Rare Across America - Rare Disease Legislative Advocates

July 29 - September 8, 2019 (Registration is open from May 8 through July 3) WHERE The local offices of your Members of Congress WHAT Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member's staff.

Patient and Family Conferences - Fibrous Dysplasia Foundation

FDF is Thrilled to Announce our 2019 Patient and Family Conference November 16-17, 2019 in Orlando Florida Conference Agenda Topics to be covered include clinical and pre-clincal research advances as well as craniofacial, endocrine, orthopeadic and pain care. As with previous years, there will be a patient-only reception as well as a full-group dinner.

Get Our Newsletters!
Subscribe
Sweetwater, TN 37874, USA
423-333-2017

Share on social

Share on FacebookShare on X (Twitter)Share on Pinterest

Check out my website  
This email was created with Wix.‌ Discover More