Myasthenia Gravis;

the snowflake disease

My dear friend Kelly - also one of a kind (a pun you'll understand about shortly), went through an experience many of us will never begin to comprehend just over a year ago.

Katie, along with her village have been working very hard and deserved some new beautiful family moments to share with the world along with their inspirational story.

Myasthenia gravis, a rare neuromuscular junction disease that leads to varying degrees of skeletal muscle weakness. Most serve cases are a crisis and end up on a ventilator.

With no two same cases or treatment plans, MG for short is known as the snowflake disease. MG is hard to diagnose, and many doctors are hesitant to do so. When caught, it was common for women in their 30's. Not only was Katie just 30 years old, her daughter Ava was just one year old at the time.

"She was my greatest fight. As I was getting worse, I told my brother before I was intubated that whatever may happen, please help take care of her."

In the beginning of June, I was losing muscle function throughout my body.  Thank God for a second opinion and going to UPMC in Pittsburgh. Presbyterian hospital may have given me my answers, but Shadyside took on all of my storms. I lost the ability to walk and spent a good majority of time on a ventilator, then had a tracheostomy. Also, those affected with MG often have a large thymus or develop a thymoma. Mine was a stage 1 cancer and robotically removed. No chemo or radiation was needed due to a decision made by thoracic team.

Eventually my nurses got me walking again. We worked more on it at rehab then, unfortunately I lost ability and needed assistance again and had to return. I was in a wheelchair and using a rollator at the time. God love Jarrod, he actually had to carry me and help me get out of bed. He's truly my rock.

My rehab was at encompass Altoona. I was their featured person last August because of my story, spreading awareness and keeping a positive attitude. I had two incredible neuro PA's. One instilled in my mind that we fight for our baby's and that carried that with me the whole time. I wrote notes while sedated about having to get home to her. The other PA caught me in one of my worst mornings and made it possible for Ava to see me in person. The weekend I saw Ava was the weekend I had and awesome respiratory therapist who got me off the ventilator. She was my push.

What is your life like now?

Last year was about getting my diagnosis, treatment, and healing. This year I’m learning how to be me and live life with MG. A year ago I asked my husband what if I was autoimmune and that wonderful man said to me the night before we got our answers that we will take on whatever it is! One year later, here we are as a team taking it on one day at a time! I am learning how to live everyday life with MG and remain stress free as much as possible and savoring every moment I can with my family. I am Currently working on building my muscle strength back.

My neuromuscular specialist: the guy I’ve called my number one from the beginning, laid out a medical plan and told me that I’d have life, chase after my daughter, and be able to hold and do things with Ava again. At the time, I thought it was never going to be possible judging by my medical state. Almost a year to the date that I met him, I can say he gave me everything he promised!

What can we do?

Talk about it, listen to people's stories and live in the moment! I had bad PTSD after this journey, so talking helps me cope. If someone is comfortable opening up, take it in!

Wear Teal

and help spread Myasthenia Gravis awareness in June and all year round!

Donate for research

Donating plasma is actually super helpful. It's used in IVIG which is something you can look further into.