Girls Chronically Rock was birthed out of the need for community after I was diagnosed with Muscular Dystrophy a few years back. A rare diagnosis, only affecting about 50,000 Americans, I realized many people don’t quite know what MD is. Before my life had to make room for it, I didn’t know what is was either. In honor of Rare Disease Day (today!), let’s answer some of the common MD questions:
What is muscular dystrophy?
Contrary to popular belief, muscular dystrophy is a series of muscle diseases that causes the weakening of the skeletal muscles over a series of time. The patient’s body has a mutation, some abnormal genes start to interfere with the production of proteins needed for the body to generate healthy muscle.
There are no external causes of Muscular Dystrophy. Internally, it comes about when certain genes in the body are mutated, causing the production of proteins in the body to generate healthy muscle fibers.
Once a person has the mutation, MD can become hereditary. Those with a family history of the disease are at a higher risk of developing the disease or passing it along to their children.
What symptoms should I look out for?
According to Healthline, our bodies house more than 650 skeletal muscles. Therefore, Muscular Dystrophy can impact a very large portion of the body in different ways.
Those who have not been previously diagnosed, they may want to check in with a doctor if they have any of the following symptoms:
- Difficulty walking
- Difficulty with use of arms
- Limited mobility
- Difficulty breathing
- Scoliosis
- Heart problems
- Difficulty swallowing
Depending on the type of MD, a person can have a difference in severity, number, locale and onset of symptoms.
What types of Muscular Dystrophy are there?
We currently know about nine types of MD, but there are six that are most common. Each type contains slightly different genetic mutations and are altered depending on the subtype, if applicable.
- Duchenne – The most common type of MD, this type usually occurs in young boys between birth and the age of two.
- Becker – Most similar to the Duchenne type, Becker MD mimic the symptoms but progresses much slower and tends to be milder in nature. Those with this time usually don’t experience symptoms or diagnoses until their mid-20’s or later.
- Myotonic – Those with myotonic MD are majorly affected in their face and neck muscles. They have an inability to relax muscles after contractions and often experience drooping faces and eyelids and necks that resemble swans’.
- Facioscapulohumeral (FSHD) – Shoulders and hips are first to be affected with this type of muscular dystrophy. Shoulder blades tend to stick out like wings when the arms are raised.
- Congenital – This type of MD impacts boys and girls between birth and the age of two. It can vary from a mild disability to a severe impairment.
- Limb-girdle – Onset of this type of MD typically occurs between childhood and adolescent years. Hip and shoulder muscles weaken first, followed by drastic difficulty with lifting the front part of their feet, their arms, and legs.
What about me?
When I was 24, just finishing up my MBA program, I was hit with an onslaught of symptoms. I had increasing difficulty with moving my legs and lifting my arms. Pangs of pain happened more frequently. And I was falling left and right. It was stressful and utterly confusing trying to assess if it was my weight, or maybe something wrong in my brain. It certainly couldn’t have been my age – I hadn’t even made it to my quarter life yet.
Many doctor appointments later, I was diagnosed with limb-girdle muscular dystrophy. Many years and additional doctor appointments past, I’m still unaware of my subtype. Currently, MD doesn’t have a cure, but can be managed with personalized care plans that incorporates medications, breathing apparatuses, physical therapy, home health-aides (to help with feeding, make up application, bathing, etc.), and transport aides. In my years of dealing with this, I’ve been trying to enroll in trials to see if I could gain insight about my subtype and maybe even get closer to helping finding the cure, but to no avail.
Trials are tricky. They can either help solve the problem or cause a slew of others, making the participant even sicker than they were before. It’s risky business. So I continue to trend lightly, making sure to take notes and the advice of my doctors, be transparent and honest with my home health aide and doing what I can to manage my self-care and positive emotions.
(Re)sources: Mayo Clinic, WebMD, Muscular Dystrophy Association (MDA)
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Published by girlschronicallyrock
I was born and raised in Cambridge, Massachusetts. My personality is friendly, strong work ethic, and great professional skills that makes her the hustler she is today. I graduated from Framingham State University with Bachelor’s in Fashion Design and Merchandising, a year after I graduated from Cambridge College with a Master’s degree in Business Management. While earning my degree I gained invaluable experience in the business/financial and Fashion Industry with working at different departments at Cambridge Savings Bank and many merchandising companies such as Motherhood Maternity, Tommy John, Spanx, Echo Design and Fossil Group.
While in Framingham State University, I was in the Fashion Club and Black Student Union Club where I was able to meet new people and gain and learn a new experience in both groups with a different diverse of people. I knew I always had a passion for fashion from in middle school and new I wanted to be a Fashion Designer. I looked up to Fashion Designers like Kimora Lee Simmons and Betsey Johnson. I love their unique different styles and just two successful entrepreneurs who are making it in the fashion world and continuing to grow. My dream is to possibly meet both of them one day, even maybe do some business together.
At the present time, I am working as a Merchandise Coordinator for Tommy John inside of Macy’s and Nordstrom within the Boston Area. I also owned my own t-shirt line business called Girls Chronically Rock which was inspired by myself because I was diagnosed with Muscular Dystrophy back in graduate school so I wanted to make something inspirational, motivating for people who may have a chronic illness like myself or may be battling anything in their life, to let them know that they rock no matter what. With the wonderful work experiences over the years, I am really just an easy-going person where sometimes I love to be at home watching lifetime movies or many of my tv shows that I love to watch on a daily basis. I like spending time with family and friends whether its traveling, going out to eat and going to special events.
Through my education and work experience, I have gained the knowledge and skills necessary to excel as a Fashion Designer and Visual Merchandiser. I am both qualified and eager to strive at my business Girls Chronically Rock and continue with dedication, and I know my hard work will pay off and I will reach my goals. I will soon hope to have my t-shirt line sold in department stores such as: local boutique stores, Macy’s, Karmaloop Foot Locker and many more.
Here is a little more in depth detail about how I was diagnosed with Limb-Girdle Muscular Dystrophy:
I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business. When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009. While in graduate school I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more.
So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually 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 so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin and I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more.
They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok.
Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, because I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations 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 and my part in the fashion industry.
I have the wonderful support from my family and friends but at the ending of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind.
When going out I find myself researching about where I am going first, like does this place have stairs?, does it have an elevator?, do they accommodate handicap people? So all of these things I worry about when I go out and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to except it and make certain changes in to my life such as now walking with a cane in order to keep my balance and helping me not to fall. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote.
"There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?"
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