Get Ready for Limb Girdle Muscular Dystrophy Awareness Day 2018

Proclamation from the Mayor of the City of Cambridge”

Last year, I had the awesome opportunity to bring Limb Girdle Muscular Dystrophy Awareness Day to my hometown of Cambridge, Massachusetts as an official state ambassador. After taking the step to find and connect with other young adults living with MD, I found a facebook page, as well as groups and an informative website that all help individuals with MD talk, connect and share stories and resources specific to what each person is experiencing while having Limb Girdle MD. More than 20 people are currently in my support group. My friends here in Boston have a different type of MD, but can still relate to a lot of the daily challenges. Being able to just talk about what we are going through was and will continue to be priceless. I decided last year to take a leap of faith and reached out to my mayor and governor to declare the first LGMD Awareness Day last September 30th. I was able to go into the Chamber Officer in City Hall of Cambridge to give my testimony about what LGMD was and how it affected me before receiving a signed proclamation from Mayor Marc McGovern. Now, the time has come again, and I want to help you spread the word and gain understanding about LGMD in hopes that others will start to spread awareness about chronic illnesses of all types.

What is Limb Girdle Muscular Dystrophy?

According to https://lgmd-info.org, LGMD is:

  • A term used for a GROUP of rare neuromuscular diseases which are inherited and known to cause muscle weakness & wasting.
  • The muscles most affected are those closest to the body (proximal muscles), specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.
  • More than 30 forms of LGMD exist; with new forms (sub-types) being discovered each year.
  • Some LGMD sub-types have a ‘dominant’ inheritance & some have a ‘recessive’ inheritance pattern.
  • In some cases a family history exists & in others, no family history of the disease is known.
  • Onset of symptoms can occur in childhood, adolescence, or even adulthood.
  • LGMD occurs in all parts of the world & among all ethnic groups.
  • Males & females can inherit LGMD.
  • No cure or treatment exists for these progressive diseases although promising research is being carried out which gives hope to many individuals.

Proclamation from Governor Charlie Baker”

What makes it different: It affects my limbs from arms down, putting on a jacket, and even  raising my arms up fully can difficult for me. Even giving someone a hug can be a challenge especially if someone rushes to embrace me and potentially knock me over. In the morning and throughout the day, rolling out of the bed is not as easy as able-bodied person. It takes me a lot longer to do simple tasks that the average adult can do with ease. Low seating, windy days, uneven pavement or gravel surfaces and even holding a cup can all be challenges to someone with LGMD.  

What symptoms I live with: Lately, I have been experiencing back pain which means it’s time to go back to physical therapy to learn some restorative stretches and workouts to keep my pain at minimum throughout the day. At this point, walking with my cane is getting uncomfortable so getting a walker is an idea I will test out in the coming weeks.  I see (3) different Neurologist and like getting each different perspective. Once I get my walker, I plan to pimp it out of course Girls Chronically Rock style. I took (4) different tests and still haven’t pinpointed the exact sub-type I have. I get Echocardiograms (Echo) once a year to stay on top of everything going on in my body.

How its treated: The only treatment is physical therapy (pool), even that is getting difficult to get out the water and change clothes. Through my process of dealing with LGMD, I have learned that the pool is the best treatment for moving my muscles in addition to physical therapy. I’m working on getting a PCA to help me continue all the everyday things that have become a challenge or unrealistic for me to try and do on my own.

Why Research and Community are Key to Our Success: Without the help, support and empathy of my group members, I wouldn’t know how to travel well with MD, how to make it through rough days or how to face the many obstacles that come with this condition. Having the information is just one side of the coin. Having a community is the key to having the right information and a wealth of opinions and first-hand experiences to help you live your best life informatively and intentionally. LGMD Awareness Day isn’t just about me. It’s about my friends, support groups and most importantly the early diagnosed versions of me who may feel all alone in light of a life changing conversation with his/her doctor. You are not alone. We are in this together.

If you’d like to support all of the work that goes into LMD Awareness Day, please make your donation here:  https://lgmd-info.org/lgmd-awareness-day/ To support MD research, initiatives, and communities, please make your donation here: www.mda.org

Spread the word. Spread the information. Spread the community.

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?" AS SEEN IN...

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