What I Want People to Know About Living With Limb-Girdle Muscular Dystrophy

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I have limb-girdle muscular dystrophy (MD); I was diagnosed at age 24. I started to get symptoms around 2009. While in graduate school for fashion design and merchandising, I began to fall repeatedly; my leg would just give out on me without notice. I wasn’t able to pick myself back up; I would need assistance from someone to lift me up with all their might. I also began to notice that I was unable to lift my right arm up all the way when I tried to reach for certain things in the kitchen cabinets, or exercise. At first I thought maybe I needed to go on a diet and lose weight, but in the back of my mind I knew it was something more.

Keisha Greaves
Keisha.

First I went to see an orthopedist, but was referred to a neurologist. The neurologist gave me a muscle biopsy, MRI, EMG and other tests. I was finally diagnosed with limb-girdle muscular dystrophy. Limb-girdle is a form of MD that affects the limbs from the shoulders all the way down to the legs, and it progressively gets worse.

The first thing I thought was how long am I going to live? Will I be in a wheelchair soon, and what is my life going to be like from now on?  I knew I had to be strong and continue to do what I have to do. To feel healthier, I joined Weight Watchers with my cousin and lost over 36 pounds. I’ve been able to keep half the weight off, and I am still determined to lose more.

There are multiple types of limb-girdle muscular dystrophy, and five years later my doctors are still trying to figure out which type I have. They do know that the types I may have can affect my heart, so I get regular echocardiograms to make sure everything is OK.

Living with limb-girdle muscular dystrophy is still new to me. I wake up every day not knowing how my legs are going to feel or how much pain I may have. I try to be very careful when walking because if I fall, I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain number of hours, my legs start to weaken. I am currently a visual merchandiser for a very popular clothing store. I enjoy my job because it keeps me and my legs active, and I enjoy traveling to the different store locations and doing what I love in the fashion industry.

I have the wonderful support of my family and friends, but at the end of the day, they have little idea what I go through on a daily basis. I try to explain to them how my legs feel, but it’s hard. I still go out and enjoy my life, but I always have certain things in the back of my mind. When going out I find myself researching where I am going first, asking does this place have stairs? Does it have an elevator? My friends and family have no idea I must think about these things.

Living with MD has made me realize how strong I am. I sometimes get stares because people wonder what a young girl like me is doing walking with a limp, with a cane, or parking in a disabled parking spot. But I don’t mind, because they just don’t know me. Although my MD has progressed over the years, I have learned to accept it and make certain changes to my life, such as walking with a cane to keep my balance. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know.

There’s no cure or pill to “fix” my muscular dystrophy. But the endless support from family and friends helps. Living with MD is the hardest thing that I have ever done, and I consider myself much stronger for doing it. Never, ever underestimate the power of your desire. I believe if you want to live badly enough, you can live. The greater question, at least for me was: How do I decide the way I want to live? That is the question I’m still working on answering.

Follow this journey on Life With Muscular Dystrophy. If you would like to buy one of my t-shirts, head here.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I See When I Look At My Husband With Muscular Dystrophy

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When we said for better or worse, in sickness and health, I meant it.

When we married, we could never possibly imagine that you would be diagnosed with limb-girdle muscular dystrophy. When suddenly you were tired, your muscles grew weak, and your back was always in knots, we knew something was wrong. After all the doctor visits, referrals, surgeries, and painful tests we knew our future would change. Through it all, your smile, the way you constantly make me laugh, the way you make me feel safe and loved has never changed. Even after your diagnosis.

I know some days it can seem daunting and the obstacles may appear too tall. But together, we will overcome those obstacles. You may look in the mirror and see a skinnier version of who you once were, or someone who tires easily and can no longer chase me around the house, but I don’t see it. When I look at you I see your heart, your endless love for helping others, your ability to make everyone feel better. I see an amazing father who loves our boys more than anything. I see my husband who is the same man I stood next to on our wedding day.

I don’t look at you and see muscular dystrophy. I look at you and see the incredible man that you are. You are not your disability. Your future is bright and your strength shines from within you. When I vowed to be your wife, I vowed that all of me would be with all of you. I am here to help you over those mountain-sized obstacles and hold your hand when we go on walks, pick you up when you have sat too long on the floor, or support you when you have to climb stairs. The only thing that matters is that I am with you. I will hold you in my arms and run all around the world for you. Together we will be strong. My heart is ever at your service.

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The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My Boyfriend, Whose Love Doesn't See a Disability

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As someone with a physical disability, I have always thought I would never find someone who would see past my challenges. I especially thought I would never find someone who would love me. That all changed when I met you.

I have been in relationships, but they never lasted more than a couple of months. The boys couldn’t see past my disability. They got sick of helping me. I always felt like having someone help me was a “burden” on them, and my ex-boyfriends confirmed my feelings. I ended up not trusting guys, until you came along.

We met at work almost three years ago. We were both in relationships at the time, but instantly became friends. I thought you were cute the first day I met you. You made going to work fun. You always knew how to make me laugh, even if it involved scaring me or giving me a wet hug after you were outside, in the pouring rain, collecting carts. Little did I know you would be the best thing that has ever happened to me.

A Facebook post I made changed both of our lives. I posted that I was done dating. I was giving up on dating because I was sick and tired of talking to and going on dates with guys who would instantly ignore me when they found out I had muscular dystrophy. They next day, you asked me out, and to be honest, it threw me off.

Thank you for not questioning why I would probably need help getting into your car when I told you on our first date. I also want to thank you for not thinking twice about helping me with the little steps to get into my house. When you didn’t question why I needed help, I started to relax and slowly let you break down my wall that I’ve built for the past 20 years.

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Two months later, it came time for me to tell you I had muscular dystrophy. I was so nervous. I didn’t know what your reaction would be. It got to the point where I didn’t want to tell you. When you said my disability “wouldn’t be a good reason for me to leave you. I wouldn’t be able to. I love you too much,” I fell for you even harder. That comment instantly broke down my wall and I knew I did deserve to be loved.

You made me realize I was the one stopping myself from finding love because of my instant thought that I shouldn’t be in a relationship just because I have a disability. You taught me love doesn’t see a disability.

Thank you for helping me get into your house. Thank you for driving me to and from different places; I promise, I’m working on getting my driver’s license. Thank you for not complaining about helping me. Most importantly, thank you for loving me and seeing past my disability. Thank you for coming into my life and changing it for good. I love you to the moon and back.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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18 Things People Affected by Neuromuscular Diseases Wish Doctors Understood

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Neuromuscular diseases and disorders affect the nerves that control voluntary muscles, and over the course of time, the disconnect between the nervous system and the body causes muscles to weaken. An estimated 1 million people in the U.S. have some form of neuromuscular disease, and about 40 percent of them are under age 18, according to the Muscular Dystrophy Association.

Muscular dystrophy and ALS are among the most common neuromuscular diseases, but even with the amount of research and awareness campaigns, most of these diseases still don’t have cures. On top of that, many patients with neuromuscular diseases, along with their family members, have expressed their frustration with the lack of knowledge among doctors.

*Sign up for The Mighty Newsletter*

So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wish medical professionals understood about neuromuscular diseases.

Here’s what they had to say:

1. “We are not a textbook case. Each one of use is different.” —Debbie Furgason

textbook

2. “Just because we look healthy on the outside doesn’t mean we’re feeling good in the inside.” —Jessica Jamison

3. “For me being a sibling, I would like doctors to remember that the whole family is dealing with muscular dystrophy.” —Allison Beaumont

whole-family

4. “We have pain and are not after drugs for the hell of it.” —Becky Pierce Jones

5. “Listen to patients.” —Valerie Weaver

6. “Don’t blow a patient’s complaints off.” —Joanne Mims

blow

7. “Don’t act like I’m wasting your time. Have more info on the type of MD I have instead of looking in the medical book.” —Julie Anderson

8. “I am the one who cares for my child 24/7. Therefore I do know what I am talking about, and I do know what my child needs.” —Trish Ehrenfried

needs

9. “Don’t assume you know how his physical disability affects him socially or emotionally, but don’t discount that it does have an impact.” —Tina Riley

10. “It is an economic disaster on the entire family.” —Debbie Thomas

11. “This is a medical profession, not a paycheck.” —William England

paycheck

12. “When dealing with a new doctor, I need them to understand that yes, I can talk medical terminology.” —Brandi Vozsnyak

13. “Give patients more information because sometimes we don’t understand what is happening to us.” —Christopher Parsons

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14. “When my doctor finally gave me the ALS diagnosis, he would not look up from his shoes. Doctors need to learn how to give a diagnosis as part of their training.” —Pierre Lescure

15. “Parents and patients today need open dialogue throughout all of the diagnostic appointments.” —Maggie French

16. “Doctors, please continue to follow your instincts and advocate to help families find answers.” —Becky Rovenstine

advocate

17. “We didn’t ask for MD, but we have it and we have to live with. Help us manage it, listen to our concerns, especially when there are no clinics within a 10-hour drive. You are our resources.” —Marjorie Martinez-Langdon

18. “Understand that anyone at any age can have MD.” —Greg Brown

For more information, be sure to visit the Muscular Dystrophy Association’s website and Facebook page.

*Some responses have been edited and shortened for brevity and clarity

All images via Canva

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Jillian Mercado, Model With Muscular Dystrophy, Slays in Beyonce’s New Campaign

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Jillian Mercado has been slaying the fashion industry for a few years, and Queen Bey has taken notice.

The model with muscular dystrophy announced this week she’s featured on Beyonce’s website wearing new merchandise.

“OK LADIES now let’s get in FORMATION! So BEYond excited to finally announce that I’m featured on the official @beyonce website!!!!” Mercado wrote on Instagram.

If you go to shop.beyonce.com, you can see Mercado modeling the latest round of Beyonce merchandise.

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Mercado has made headlines several times. In 2014, she modeled in Nordstrom’s ad campaign alongside Alex Minsky, who lost his leg while serving in Afghanistan; Shaholly Ayers, who was born without her right arm below her elbow; and Heather Taguchi, a 7-year-old girl with Down syndrome. Later that year she starred in the “What’s Underneath Project,” a video series where people take off their clothes while being interviewed. While discussing her edgy style and what it’s like to be a model with a disability, she offered this gem: “If you’re different, that’s sunlight in somebody’s world.” She went on to star in a Diesel campaign and is now a regular at New York Fashion Week.

Of course, we look forward to the day when it’s not news that a person with a disability is featured in an advertisement, but we love how Mercado has continued to push for inclusion (wearing some badass clothes while she does it).

h/t Mashable

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21 Truths People With Muscular Dystrophy Wish Others Understood

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There are many different forms of muscular dystrophy (MD), an umbrella term for a group of genetic diseases characterized by progressive weakness and degeneration of muscles in the body. Duchenne muscular dystrophy is the most common form of the disease, and it primarily affects boys. Becker muscular dystophy is also common but far less severe than Duchenne. Some forms of MD appear in infancy or childhood, while others may not show up until middle age or later, according to the National Institute of Neurological Disorders and Stroke.

While treatments have helped increase life expectancy for those with MD, no cure currently exists. Due to its various forms, there’s a lot of confusion around what MD is — and what life with it entails.

So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wished others knew about the disease. Here’s what they had to say:

1. “It is not MS!” —Melanie Carson

2. “It’s not just my legs that are affected; it’s my entire body.” —Leah Marie Spencer

3. “Muscular dystrophy has no effect on intelligence. Having a physical disability does not mean I am mentally lacking, and I should never be treated as such.” —Kelli Bosarge

Muscular dystrophy has no effect on intelligence Kelli Bosarge

4. “I can fight with it, but I can’t beat it.” —Bhupender Sharma

5. “Muscular dystrophy is not contagious.” —Tammy Gregory

Muscular dystrophy is not contagious Tammy Gregory

6. “It not only affects the person with it; it affects the family.” —Robert Avalle

7. “Don’t stare! Ask questions if you are curious.” —Kate Dharma

Don’t stare! Ask questions if you are curious Kate Dharma

8. “It presents differently in every patient.” —Jamie Russell Peterson

9. “Working out isn’t going to make us build muscles and get strong again.” —Ria Spencer

Working out isn't going to make us build muscles and get strong again Ria Spencer

10. “I’m in a chair, but I can understand and hear you.” —Melanie Spall

11. “There’s no cure.” —Jacque Robertson

12. “It can creep into any family.” —Briana Stiner

It can creep into any family Briana Stiner

13. “Everything is harder.” —Krystal Torri

14. “It took my son’s life.” —Susan Barlow

It took my son's life Susan Barlow

15. “Because it isn’t a ‘popular’ disease, some forms especially, there isn’t nearly enough funding for research.” —Autumn Sullivan

16. “I’m not lazy. It’s a progressive disease. What I may have done last year with relative ease I may struggle with now.” —Aaron Robert Drawbridge

What I may have done last year with relative ease I may struggle with now Aaron Robert Drawbridge

17. “I’m not concerned about what the community knows. It’s the medical community that’s clueless. We need a network of doctors dedicated to MD!” —Sonya Magoon

18. “Don’t roll your eyes when it takes me longer to pay, get my ID out at the airport or use the ATM. Don’t assume I am drunk when I fall down… I am doing my best to be independent and to maintain the strength I have, but it take me longer to do things.” —Christine Pidgeon Anderson

Don't assume I am drunk when I fall down Christine Pidgeon Anderson

19. “Not only is it physically disabling, but the emotional toll it’s taken on me is just as bad. I can no longer do the things I once did for myself and it’s very frustrating and depressing.” —Tracy Barhite

20. “Not everyone with muscular dystrophy [uses] a wheelchair. Some of us look completely healthy until we get to a staircase, have to pick up something beyond our energy level or walk a long distance.” —Tammy Lefkowitz

21. “It’s not the end of the world for some of us.” —Kristin Dutt

It's not the end of the world for some of us Kristin Dutt

In addition to the many forms of muscular dystrophy, the Muscular Dystrophy Association is dedicated to finding treatments and cures for more than 40 neuromuscular diseases that cause progressive muscle weakness, including amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease (CMT) and spinal muscular atrophy (SMA).

For more information, be sure to visit the Muscular Dystrophy Association’s website and Facebook page.

*Some responses have been edited and shortened for brevity

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