Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • Global Collaboration
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • JOIN US
  • Donate
  • JOIN US
  • Donate

AFOs with a sparkly dress

Home / Living with FSHD / AFOs with a sparkly dress

Posted on: Dec 23, 2019

Alexandrea ComstockBY ALEXANDREA COMSTOCK
LETHBRIDGE, ALBERTA, CANADA

I grew up not knowing what was wrong with me as I faced the consequences of what I eventually learned was early-onset FSHD. I had foot drop. I couldn’t close my eyes. I had severe scapular winging, scoliosis, and lordosis. People called me “duck” and would quack at me. I hated gym class and would often be removed for refusing to participate. I knew my limits, but nobody believed me. I played in an all-male lacrosse league for two years, but the bullying because of my body tormented me to the point that I finished my schooling at home at age 17.

I had a daughter when I was 19 years old. When I turned 20, I went to a specialist to inquire about corrective surgery on my spine, but was instead diagnosed with FSHD. I decided to begin modeling, to show the world what FSHD had done to my body. Because of my disease, I was thought unfit to care for my daughter. I fought that charge and won full custody. When I was 21 years old, my daughter was also diagnosed with FSHD.

During those years, I created the Faces of FSHD project. It is a place for people to share their selfies, stories, and connect as a community to raise awareness of this condition. We have sold shirts worldwide, held a fundraiser, and we now proudly supply free photography to individuals with disabilities.

Every person I have ever met with FSHD was through Faces of FSHD. This included Mika Mae Jones, a model from Los Angeles. She and I collaborated on Faces of FSHD. Mika was like a sister to me. If I didn’t have FSHD I would not have had Mika. Tragically, Mika passed away this past June after she fell and sustained severe brain trauma.

I don’t hate FSHD, but it hurts a lot. It is a heavy weight.

My mom was recently diagnosed with FSHD as well. It has been extremely difficult for her psychologically. I grew up watching my mom work hard and provide for everyone around her, no matter how she felt, and that’s who I want to be. More than anything, I want my daughter to know that she is supported, loved, and beautiful. I want her to have a community to relate to, talk to, and enjoy.

At age 23, I’m a single mom, I have 11 rescue animals, I’m an advocate for FSHD, I’m an awareness model, and I am trying to change the world. I hope I can make an impact on this world for my daughter and for everyone with disabilities. I have a loud voice, a big personality, and I intend to demand attention until we have what we need to live a healthy, long life. I will wear AFO foot braces with a sparkly dress without hesitation. I think that’s important.

AFOs in a glittery dress. Out and proud with FSHD.
Mika Mae Jones and Alexandria Comstock modeling in Los Angeles. Photo by William Zdan @billyzdan.
Share

Filed Under: Living with FSHD

Comments

  1. Amy Tesolin-Gee says

    April 2, 2020 at 8:47 pm

    Beautiful women and beautiful souls!! And may Mika Mae Jones rest in peace…

    Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by