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Meet - Katherine DeSilva

Massachusetts, USA

When were you diagnosed with MS? October 2017

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

I was diagnosed with Optic Neuritis 12 years ago. My mother and a cousin on my mother's side both have MS. So, I knew in my heart it was in my future too. In 2014, while undergoing IVF treatment, I started experiencing symptoms. Prior to my diagnosis, multiple tests were conducted to check for Lyme, and several scans of my back were carried out to investigate any damage that could have been causing the sensory issues in my legs. From July 2015 till August 2016, I was pretty much symptom-free and assumed that I was in the clear. However, by August 2017, I couldn’t ignore how much my MS symptoms impacted my life with my new baby. I had an MRI in October of the same year, which confirmed my diagnosis of Multiple Sclerosis.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

MS affects my life in various ways from day to day. Sometimes I can almost pretend that I don’t have a chronic illness. Other times it is incredibly challenging to fulfill my responsibilities, such as work and caring for my daughter. Over the past two years, I have experienced increased symptoms of fatigue, brain fog, and sensory issues. During a relapse, my face, hands, feet, legs, and forearms are often plagued with numbness, pins, and needles, with my legs and feet being the most affected. At times, they can feel numb, burning, and painful all at once.

#3: Who/What has been your most important support system?

I am supported by a strong family and faith community. I also have a wonderful medical care team that works together to help me manage my progression.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I can walk longer distances now, after significant amounts of physical therapy. However, for longer walks, I will use a cane for additional support. For days out that involve a significant amount of walking, I will use a rolling walker for quick access to somewhere to sit and for additional balance. As well as, If I am going somewhere that my rollator would not be the most effective like uneven terrain, narrow passages, or stairs, I will use a pair of forearm crutches.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

It's usually easy for me to stay motivated. I have a lovely daughter who is spunky and empathetic. Doing my best for her is always a huge motivator. I also write about what I am going through to help me cope. I write and illustrate children’s books as part of my self-care routine. When I am feeling like “I just can’t do anything” drawing and writing makes me feel successful. Sometimes that means using speech-to-text or drawing with a computer because my hands aren’t able to hold a traditional drawing tool effectively.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

When you are first diagnosed it is an important time to let go of stress. It may mean letting go of unhealthy relationships, intentions of how your career will look going forward, or expectations of your home and social life. Taking a step back and simplifying what your life looks like will make it easier. I believe that you should focus on what is most important with the least amount of stress. I remind myself regularly that although my life might not look like other parents, it is still full of love and we can reach our goals and support each other.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

In the last year, I have become more active in Team Spinal Tap, a Bike MS team started by my cousin and uncle. I have also begun writing children’s books on the topic. In no way do I plan to make a business or career out of my writing, but it does give me something positive to focus on when I am having a hard time.

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Congratulations Kate. You are an inspiration to all especially to your precious daughter. An amazing mom and warrior!

Replying to

Yes she is an amazing mom and warrior! Thanks for reading fawpris!!

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