After going to so many different specialists in my area I had grown weary of finding anyone who could tell me what was going on in my body. It wasn’t until I was sitting in a waiting room in Mount Auburn Hospital that I was finally given the gift of an accurate diagnosis so I would know what to expect and how to handle the symptoms and seasons that would come next. I remember the day of my diagnosis. I was in shock, denial, full of anxiety, nervousness, and fear. I didn’t understand why or what I had. I would need a whole year to finally accept it, but there was one person who made that day and that year the best experience I could have had during such a crazy time: the right doctor. Kathryn Wang was my superhero in a white lab coat. She was attentive to my every request, thorough in her examination and patient in my denial. She carried a comfort and compassion I couldn’t replace or replicate in any other office. She was my like partner in fighting Muscular Dystrophy.

Though I started with Dr. Wang, our time was short lived as she moved to another hospital and my insurance no longer covered her services. I was heartbroken, but I knew that I could still find the care I needed minus the one of a kind experience I had with her. Since then, I have found wonderful doctors, but few like Dr. Wang. They are not as warm, thorough or patient as she was and I have learned to deal with that…until I was able to reconnect with Dr. Wang.

One day, while scrolling online reviews of doctors in my area, I found a doctor with her exact name. Hopeful that there weren’t that many Kathryn Wang Had my doctor write the referral and scheduled the appointment. It made my day. I was uber excited just to see the doctor. With her, I always get a full examination. She doesn’t leave anything out. If I ask, she will do it. She showed me exercises to compliment what I learned at physical therapy. She just really cared. She gave me her email and let me contact her at any time.

I just feel so excited that we are able to reconnect. When she came in she said, “Keisha! I saw your name and couldn’t believe it.”

I share this story to help you identify a few key traits of a great doctor. Having the right support medically can be the difference in your quality of treatment, recovery, and experience. I recommend looking for the following when evaluating a potential doctor:

1. First, are they thorough? What I loved about Dr. Wang from day one was her insisting that we do every possible test to figure out what was happening with my body. Not every doctor will go through the trouble to do that.  
2. Second, do you have a connection with them? This doesn’t happen with every doctor, but I what I missed the most about having Dr. Wang as my doctor was our connection. I always had the feeling that she truly cared about me as a person and not just as another patient. That connection may look or feel different for every person, but we all know when we click with another person. Identify those things you need to see (compassion, patience, consideration, thoroughness etc.) and make sure you’re comfortable with your choice.
3. Lastly, are they willing to direct you to others when necessary? This isn’t something you will necessarily be able to ask or know about until something requires the conversation, but what I loved about Dr. Wang was that after she diagnosed me, she sent me for a second opinion to her mentor. Her mentor (the doctor who trained her) ended up becoming my doctor as Dr. Wang moved, and I couldn’t have been more grateful for her humility and consideration to make sure I was in very good hands when she left.

All this to say, I’m not a medical professional and this is not an exhaustive list of what to look for, but these are traits that I have been blessed to experience while working with Dr. Wang and other doctors. I hope that you can use these qualities to find the right doctor to help you navigate chronic illness one day at a time.

 

 

October symbolizes a number of pressing issues that everyone needs to be actively engaged in understanding, addressing, preventing to include domestic violence awareness, bullying prevention and breast cancer awareness month. Being aware is one side of the story, but having a loved one go through breast cancer is what gave me a new motivation for advocating and staying informed in the month of October and throughout the year.

2013, was the year it all happened.

My mom went to get a routine mammogram, saw a small lump and out of precaution, her doctor recommended she get a biopsy just to make sure it was nothing more than a cyst. It was that test to led to a few more that told us what no woman, mother or daughter wants to hear: it was stage 1 cancer. That year really rocked my world as my mom would now be fighting something neither of us could have imagined. Luckily, the cancer was just stage 1 meaning that it had not spread to other parts of her body. Even though it was a treatable stage of cancer, it still had me on pins and needles as any daughter would be – especially when your mom is your best friend. I just wanted her cancer to be gone. Thankfully, because her cancer was caught early on,  she had the option of chemo or radiation at a hospital here in Boston. I went with her every day Monday through Friday early in the mornings to complete her treatments. I remembered how she looked tired afterward, but we both knew that each day of treatment meant another day of beating cancer.

On top of that, my mom had a kidney disease at the time of her cancer diagnosis. Thankfully, it came and went. She later got a kidney transplant. It was just a scary time, waking up crying, going online researching every stage, always worried. Cancer in different forms runs in my family, but every diagnosis has been its own journey. The thought of not having my mother made me question my own existence. I wouldn’t know how to exist. I’m a mommy’s girl at 33. The bond that we have is super strong. I wouldn’t know how to function without her. We talk every day morning or evening. She wants to make sure she hears my voice every day. That year was one of our most difficult seasons.

As a daughter, all I could do was be her biggest ally. I was made every effort to be as supportive, comforting, and distracted her with every chance I could get. I found that laughter and intentionally keeping her preoccupied helped to keep and my mind off of the diagnosis on more on fighting back by living life to the fullest while getting the treatment that she needed. It now seems like a dream almost. It was the Cancer that came and went so fast that I have to think hard about what year it was, how long it’s been and what day it all happened.

As you support those you may know who are battling or have battled cancer in the past, rally around them. Let them know you care. Call them, visit them and remind them that they are not fighting this battle for healing and recovery alone.

I couldn’t be more thrilled that my mom made it through her diagnosis, treatment, and recovery from breast cancer. One day I was the supporter, the nurse, the ally, and now, as my MD develops, I need her more than ever.

 

drive.google.com/a/cctvcambridge.org/file/d/1ZqGNuPsNvERtHoKbDl8ADX-wA3iQtUtS/view

“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.

I am so excited to share the video CCTV Cambridge News did on me from my muscle walk.