Woman With Charcot Marie Tooth Disorder

To say it has not been easy finding myself is an understatement, that’s for sure.

I put my parents through virtual hell from age 10 until my early twenties. I’ll spare you the details for now, but let’s just say…

Delinquent depressed teenage girl + mom fed up and near nervous breakdown = Shipped off to boarding school far, far away.

Like many teenage girls, I was really insecure and wanted to be accepted so badly that I literally cried out for attention. Everything was black & white, and I remember worrying constantly…

What if no-one saves me a seat at lunch? What if I NEVER get invited to Homecoming? What if no boy EVER really likes me?

I wanted to have the “perfect body” and “perfect boyfriend” just like Seventeen Magazine told me I could have and should have. There were no Dove “Real Beauty” campaigns back in the 80’s. When Kate Moss said, “Nothing tastes as good as skinny feels.” I believed her, and so did millions of other girls.

And if having a positive body image wasn’t hard enough, the fact that I had a physical disability I didn’t understand put me (and my poor parents) over the edge.

The Invisible Disability With A Dumb Name

I learned in 2nd grade (a painful nerve conduction test proved it) that I had a neuromuscular disorder called Charcot Marie Tooth Disorder (CMT).

Learn about Charcot Marie Tooth Disorder here.

I didn’t want to learn or talk about having a neuromuscular disorder; especially not my feelings about it.

If someone asked me why I couldn’t run or jump, I’d say “I was in a ski accident “ or another lie involving a sport I wished that I could do.

I had fears floating around my terrified teenage brain that I never talked about with anyone…

What if my dropfoot trips me and I fall down the stairs?

Since I can’t run, how will I get away if someone tries to grab me?

What if I get worse like my mom?

What if no one wants to date me EVER because of my disability?

All that worrying about “ what if’s” prevented me from figuring out who I was.

I hid my body under baggy clothing because I felt damaged and ugly on the inside.

Kicking Disability In The Ass

There was no epiphany or spiritual awakening.

I just grew up and decided I was over worrying about the things I could not control, and I focused for the first time in my life on the things I could.

After getting a master’s degree in social work from the University of Michigan, I learned my passion was helping girls and women with self-esteem related issues from my first job as a therapist and teen empowerment educator (making a $22,000 a year ) at a social service agency in Chicago.

I got married. Had kids.

Got married again. Added step-kids.

I try to exercise every day (mostly).

It’s hard to move my muscles sometimes.

I do it anyhow.

Why Trend-ABLE?

  • I love fashion and expressing my personality through it.
  • I love helping friends and family find clothing that fits their personality (regardless of any disability).
  • I find that a perfectly fitted outfit, new lipstick, or accessory illuminating your eyes and/or personality has the power to also boost confidence, ultimately allowing people to feel better.
  • Fashion for people with invisible physical disabilities is nearly non- existent. There are some brands designing for disabled people but their focus is on visible (wheelchair dependent) disabilities.
  • As an AFO (leg brace) wearer, the shoe catalogues geared toward people “like me” feature smiling grannies on the cover, wearing ugly black velcro “comfort” shoes that are definitely not my style.
  • I started to wonder if there are other women out there with invisible disabilities who want to look and feel their best but settle for shoes or clothing because they fit.
  • I spent hours researching other invisible physical disabilities, stalking online support groups and talking to women with MS, Arthritis and Lupus to name a few. These women share similar feelings and challenges.

Trend-ABLE is for perfectly imperfect women with invisible physical disabilities, like myself, can meet, hang out, share tips, and inspire one another to look and feel our very best.

I hope you will join me in the newly formed Trend-ABLE community.

42 Comments

      • I would like to find out how I can buy both the boots and the black shoes. I wear AFO’s in both shoes and these will make me sooooo happy!

        • Hi Donna,

          The boots are by Stuart Weitzman (detail on the boots blog) & the shoes are by Rebecca Minkoff. I am not sure if this style exactly is still out but I have tons of links to cute similar shoes on the ”trends & tweeks page” and definitely like the Facebook page as other people have listed boots and shoes they like. Thanks so much

  1. Laine- this is a great idea! Thanks for being brave enough to share your challenges publicly! I look forward to reading your blog and the responses as we begin to support each other
    Thanks!
    Lynne

  2. Lainie, your blog is a great idea for women of all ages and I commend you for it. Since I am a 75 year old male with late onset CMT, I am not into women’s fashion. At least, not as yet. I signed up for your site not realizing your focus. So, when you have a moment, please let me know how to unsign and I will leave you to address your audience without an old man traveling along.

    Best to you in what you are doing,

    Alan

    • Hi Alan,

      You may get a few tips 😀 I will not be sending out many emails so there is really nothing to do. If you dont want the emails, send them to your trash 😀

  3. Lainie,

    You sound just like me, down to the “how will I get away if someone tries to grab me?” I received my first set of afos since 7th grade, gone through surgeries in Ann Arbor while attending EMU, and worn multiple different afos since. I am an orthotist (currently a stay at home mom) and have torn apart so many shoes and boots and put them back together so they were wearable. I’m so glad to have found your blog!

  4. I just found your blog, and I love it. I’m a 68 year old grandma with CMT, and I like looking as stylish as a 68 year old can look. You have such a positive outlook, and after spending the morning reading all your posts – you have great tips and ideas. Thanks for starting this!

  5. I too have CMT and live in Florida would love to wear sandals but never enough support and can’t go without socks
    I see you do both and suggestions
    Beth

    • Hi,

      It depends on what kind of braces you wear. When i used to wear the plastic kind they custom made, I found thus site called AFO liners. Now, she only sells to doctors & orthotists. I ended up having a soft liner made myself (she charged $40 each sock) & copied hers. Now, i wear the carbon fiber blue rocker. I just had the back itself lined in moleskin type fabric. Thamks. Hope this helps.

  6. I’m so glad to have “stumbled” across your website. As a 37 year old Mom, wife, and teacher, with CMT 1A, looking fashionable is important to me! Trying to find shoes to wear with my AFOs that are fashionable is a whole other problem. Thanks for helping me to connect with others who share in the woes of living life to the fullest!

  7. I am so glad you are doing this. I have CMT and 68, but still want to look my best. Additionally, I am tall and have big feet, which makes getting my AFO’s into nice looking shoes a real challenge. I am lucky that I do not have any foot deformity, so I can wear shoes that come in 12WW. I wear men’s size Skechers, and women’s Grasshoppers, which come in 12WW, because these brands are light. My father had CMT and was a biomechanical engineer, who designed prosthetics, so designed his own AFOs. I have taken my AFO’s and modified them. I have ones like yours, but I asked my orthotist to cut away the side panels between the first and second strap, to make the orthotic lighter, and I find no need for the second strap. These are my around the house AFO’s. I cover these AFO’s with a nude nylon knee high, so when I wear shorts, the AFO blends in. I wear a knee high, and fold the top if it over the strap of the AFO, which protects my leg from the strap scratching it. I have a second pair that I wear for walking longer distances. They are also modified to be lighter. I have found that most AFO’s are over built and uncomfortable to wear for long periods, besides being ugly. They rub in the wrong places, and some pinch. Most of the time this is caused by the fiberglass framing around the carbon fiber bracing. This can always be modified by a good orthotist.

    I loved your boots! Where did you find them?

    I have just started reading your blog, and hope to find some useful information. I have never given up on exercise and trying to look my best, although the challenge for those of us with CMT is sometimes overwhelming. Thank you so much for starting this. Good luck!

    • Hi Kim,

      What great tips! Thank you. Those boots are by Michael Kors. Every year, they make a similar style that’s flst with a side zipper. Thank you for following this and giving great input.

  8. Hi Lainie,
    I’m so excited I found your page. I am a 32-year-old wife, mom, and teacher. I can relate to so much of what you have written here. I was diagnosed with CMT when I was 15 but I have only recently embraced it rather than hiding from it, so I’m looking forward to learning your tips and tricks.
    Thanks for the support!
    Heather

  9. Yo had me at skinny jeans and leg braces! Except I’m really the old lady, 70 in May, in skinny jeans or stretchy pants as my husband calls them. I’ve graduated into gauntlet braces and they screetch “I’m ugly wear me”. My 8.5 narrow foot is stuffed into a 10-10.5 E shoe. The guy in Vegas wants my 1st born to make comfortable braces. I get my “uglies” at Hangers in Tucson. One little snip in Hangers told me to get over it and accept that I would wear the “uglies”! I don’t think so, transfered my records to a different Hangers.
    You made my day and love that I am not the only one with CMT who wants BLING!

  10. wonmen I like the precious data anyone deliver to your articles or blog posts. I’ll save your web site in addition to examine yet again in this article frequently. I am modestly certain I will find out plenty of brand new stuff here! Best of luck for!

  11. Hi Lainie: I’m so happy to have found your blog! I’m 53, like to be stylish, have CMT 1B and just recently got AFOs. I’m struggling because I know they help but they are quite chunky in places. Kinetic Research Noodles. My aunt with CMT recommended them. To wear them everyday I will need to make wardrobe adjustment like wider legged pants and shoes to accommodate the spring arm along my ankles. I just ordered some of the shoes you suggested—thank you!— but alsI wonder what type of braces you wear. They are much more stramlined but still seem to have the foot plate and maybe some spring? You can keep wearing skinny jeans and boots. Mine have big cuffs at the upper shins. Thanks for the inspiration!

    • Hi Reeve,

      Thanks so much for taking the time to comment. I wear the Allard Blue Rocker Braces. I used to wear hard plastic kind and also different carbon fibers but found these to provide same support and definitely much easier to fit in shoes and conceal. I hope this helps

      • It does! And I realize that maybe I don’t have to wear the same kind of braces in all settings. I will research the Allard Rockers. Thank you for replying!!

  12. Youre so cool! I dont suppose Ive read something like this before. So nice to seek out anyone with some authentic ideas on this subject. realy thank you for starting this up. this web site is something that’s wanted on the net, someone with just a little originality. useful job for bringing something new to the internet!

  13. Lainie –

    Thank you so much for doing this blog. You have no idea how happy I am to have stumbled upon it. I am about to turn 49 and have CMT 1B. I have been able to hide this from most of my friends and community for six years since my diagnosis however, this last year has proved more and more difficult to do so as my walking and balance has deteriorated quite a bit faster. I recently purchased the Allard Blue Rockers and must say they make walking so much easier although I still can’t wear daily based on several factors. I have so many questions, worries and fears and am again thankful to have found this blog!

    • Wendi,

      Your comment made my day! I am glad you found it too. The Blue Rockers are awesome & I am so glad you will benefit from all the posts. This makes the time so worth it. Thanks Again!

  14. Hi Lainie,

    Someone posted your blog address on the CMTA FB Support Group page. I am so happy she did. Obviously, I too, have CMT diagnosed in my early 50’s. I am 70 now, but love dressing stylishly, and do not like old lady shoes. I wear AFO’s when walking or standing for long periods of time. I guess working in the high school setting has kept me up on looking stylish. So happy to have found your blog!

  15. I am so happy I found your blog. I am 52 and just recently started wearing AFOs. Mine are plastic and bulky, translated = need a 4E shoe, ugh! I am in the process of getting new AFOs. They are a from Custom Composite Manufacturing. Looks like I may be able to wear some cute shoes you have posted. What kind of AFOs do you wear?

    Thanks!!

  16. I love this already!! Just found your blog and thank you for sharing!! I, too, have CMT, wear AFOs and totally understand the struggle to look good and feel good AND deal with the challenges of legs and arms that don’t work quite right:) I love finding others with CMT that share a positive attitude and focus on what we do have!!

    • Hi Shannon,

      I love your positivity & I too get a ton from meeting others like me who get it. I’m really happy you found the website & hope to see you on our Instagram or Facebook pages as well. 💕

  17. Hello – I just found your page and I love it! I have Ehlers Danlos Syndrome, hypermobility type and quite a few of the co-morbidities that go along with it. I just got my first AFO for my right foot. My first thoughts were “no more cute shoes” “ugly wide shoes” etc. THen I found your page and I am so encouraged. I can look cute even when wearing my AFO, braces, splints etc!! Thank you for your encouragement!!

    • Hi Dawn,

      I am so so haPpy to read your message and glad you found the page. Please feel free to reach out to me anytime regarding afos or anything else via our FB or Instagram pages. Thanks for taking the time to comment. 💕 Lainie

  18. Hi I have been looking for a brace for a friend who just got cmt a year ago. Do you have a page with resources of wear one could get a brace. I am confused at amazon. Her insurance company has been giving her the runaround and I would like to get her something so shes not walking on the side of her foot. Thanks, Sue

    • Hi Sue,

      Has she seen a podiatrist or neurologist? They would then send her to an orthotist to determine the best brace for her needs. Insurance won’t cover over the counter type braces…only those with a doctor’s script. The Hereditary Neuropathy Foundation can help put her in touch with the right services. Feel free to reach out to me via email at info@trend-able.com & I can send info.

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