I love this picture I took when I was at the farm in Ohio. No I am not ashamed of my AFOs.
CMTA the Charity of Choice…
Many of you may already know about the CMTA because of some of the different posts about my disability here on my blog. This charity touches a special place in my heart because they focus on trying to find a cure for the debilitating disease that I was born with. This is a hereditary disease that I suffer from as does my mother, aunt, and grandmother.
Charcot Marie Tooth Disease is a neuro-muscular disease that affects the peripheral nerves. In non-medical terms this means that is affects the nerves in the arms and legs and can spread to other nerves as well in the chest and side areas. Since, the disease deteriorates the nerves is causes problems with sensation and perception as well as muscle loss and fatigue due to not getting sufficient nerve signals to the muscles.
You can read about the amazing Ankle Foot Orthoses (AFOs) and Orthotics that I have to help me walk as well as a nice little post about how CMT affects my life. In addition I have previously posted the list of medications that they say CMTers (a term many people with CMT use as slang) should not take. This can give you an idea of what I need to remember when I go to the doctor.
While you’re at it check out these two different YouTube video posts about CMT. The first one is a news video promoting a friends documentary of her life with CMT. The second video is an inspirational video showing how Bernadette from the first video prepares for her day and a photo shoot. I have posted more articles and interviews with people who have CMT on my blog. You can click on the Charcot Marie Tooth tag below this post or search that phrase in the search engine on the right sidebar to find even more fun and interesting posts.
Finally, if this all has motivated you to donate a few bucks (that are tax deductible) please just head on over HERE to donate. I would love to hear what you think and if you have any questions please feel free too ask them.
Interview with Leigh Sanders
I’m 40 years old, married with no children (unfortunately) I immigrated to Catalonia (Spain) from South Africa 11 years ago, with my husband (who is from here). I am self-employed as an English teacher and work from home.
What are some of your experiences with Charcot Marie Tooth Disease (CMT)?
My mom noticed something wasn´t right from about the age of 2. I could not crawl like other babies and as I got older I couldn´t run or do things like other children and bit by bit started showing more and more signs of what we now know is CMT. I wore ‘built up’ shoes for years. Back then (the 70s in South Africa) no-one had even heard of CMT and as such I was misdiagnosed for years . I developed scoliosis in primary school and wore a back brace 23 hours a day from the age of 12 to 17, when I had a Harrington rod put in stop the scoliosis getting worse.
Around the age of 19 my mom and I were asked to undergo some tests in a hospital in Pretoria as part of their research into CMT. My mom showed very slight signs of what they thought I had. They did a muscle biopsy on my leg, and we were probed with needles day in and day out. As far as I remember we spent 5 days undergoing one uncomfortable test after another. At the end of it all they announced I had CMT type 2.
My twenties were spent relatively normally. My body felt strong and so I pushed myself and waitressed a lot (on and off for 10 years), sometimes even doing double shifts and then going out partying till sunrise the next day. Looking back at the things I was able to do then, I am amazed. One thing that stands out in my mind is ebbing able to carry my sewing machine in one hand and my overlocker in another. Now I can´t even lift, never mind carry, one machine with both hands.
The CMT affected me badly during my thirties. Luckily I now live here and have good health care, for which I am so grateful. I am officially seen as ‘disabled’ with a 68% disability. In 10 years I went from 33% to 68% ‘disabled’. My hands don´t work well now, I have no strength in them – I drop things, can´t lift things, can´t use a knife properly or open a bottle or can….
I would love to hear about your art business. Would you tell me about it?
I love anything to do with art. I studied fashion designing after high school and since arriving in this country have been involved in carnival every year. Last year I designed and cut carnival costumes for 62 people. I don´t have the time or the physical strength to sew much anymore. About a year ago I started making and trading ATCs (Artist Trading Cards). I have opened an Etsy shop and my goal is now to work on larger pieces and exhibit my work next year.
What inspires your art?
Colour, colour and more colour. I am totally colour-mad!
Please, tell me a little about your Inside English Business.
I am self-employed and have happily been so for 7 years now. I teach English to students of all ages and levels. The youngest student I´ve taught was 3! I adore teaching and am currently trying to finish off my advanced studies. (I am actually also writing a book about teaching English in Spain). As I work from home, I started working more and more online and now bring English speaking people into Spain to work as English tutors. They stay with a Spanish family for up to 3 months and in exchange for accommodation and meals, tutor their children 15 hours a week. It´s a great cultural exchange programme and all my clients have enjoyed the experience.
Who is your hero?
I can´t say I have one, although I greatly admire people who are true to themselves.
Is there anything else that you would like to tell everyone?
Life is filled with opportunities, even when it doesn´t feel like it.
Find Leigh Here:
As many of you already know this month is CMT (Charcot Marie Tooth) Awareness month and I want to share with you what little things you can do to help support this cause! This disease might not be well known but every 1 in 2,500 Americans have a form of CMT which comes out to about 125,000 people in the US with CMT!
I love this CMT awareness sticker the saying “Charcot-Marie-Tooth disease Funny Name… Serious Disease” is just perfect. You can help support the cause by buying some of the CMT Awareness items! They have everything from tshirts, to doggy shirts, keychains, to stickers, cards, and so much more.
Just go to iGive and make a free account putting in the CMTA as your charity. When you complete your registration go and install the browser button and then go to Zazzle and confirm that you want iGive to use the CMTA as your charity! This way you are supporting them through the purchase of their gifts as well as giving them cash back for your purchase! You can’t do much better than that!
September is CMT Awareness month and I will be talking all about what the disease is. How it affects people and why it is one of the “invisible” and “unknown” diseases. Please feel free to ask questions. I will be trying to get a couple of interviews with specialists in the field as well as others who have CMT. If you haven’t heard my story then be ready to learn a lot as I go into my past, present, and future.