Navigating Morphea – Michelle’s Story

For most of my life, I’ve had Morphea. Starting as a red mark on my chin as a
young child, it eventually turned darker and over the years, spread to areas on
my forehead, and neck.

Morphea, also known as localized Scleroderma, is an auto immune disease that
causes hardened and darkened patches of skin on the face, hands, feet, or
anywhere else on the body.

Though I was young, I still remember when we first noticed the first mark on my
chin appear. It must have been fall or winter at the time, and at first my parents
thought maybe my winter coat was rubbing against my chin causing irritation. I
even remember my parents sewing on a softer patch to the collar of the jacket
thinking this might resolve the issue, but the red mark did not go away.

My parents were quick to get an appointment through our family doctor with a
dermatologist at a local clinic, and with a skin biopsy of my chin, confirmed the
diagnoses of Morphea.
This dermatologist then referred us to Sick Kids in Toronto, for a more
specialized medical journey.
Since I was so young, my memory from the beginning of my Morphea journey
with Sick Kids is a little foggy, but what I do remember is how kind and caring
the doctors were for me and my family, and this remained the case for my entire
experience with the clinic.

Towards the end of my time with Sick Kids, when I was about 17, I noticed some
hair loss on the spot on the top of my head. My Morphea had remained
unchanged for many years until this point, and we agreed that it would be best
to go on medication to stop the progression of this spot.
I started Methotrexate, administered weekly by needle and given to me by my
parents. We continued this treatment for the year until I turned 18 and could no
longer continue my time with the doctors at Sick Kids. I stopped taking
methotrexate after it was clear that there were no further changes, or new spots
appearing. Since then, my Morphea has remained dormant, with some minor
facial changes that come naturally with aging.
In 2023, I started attending the Morphea clinic at Mount Sinai in Toronto with
annual appointments to monitor my Morphea and to stay on top of any possible progression.

My experience here has been wonderful so far, and I always feel
heard and well taken care of.
As a child, I had always wanted to meet another person with Morphea. It can be
tough to feel like you’re the only person with this condition, and It wasn’t until I
was an adult, in college, that I had met and connected with others who have
Morphea.
I do have to say that social media was a big help in connecting me with others.
There are so many Morphea groups today that exist for parents and adults to
join to ask questions and to share their experiences.

Being a child is tough already. You’re constantly growing and learning.
Everything feels like a big deal. Being a child with a rare condition adds an extra
layer to all this. Children also have no filter, and sometimes they say things that
might hurt other people’s feelings. I did experience comments from other
children about my Morphea, and if I could go back and tell my childhood self
anything it would be that “You are so much more than this condition”. I would
remind myself that “even though, Morphea is something unique about me, it
does not define my whole self.”

Of course, these are things I’ve come to learn overtime and I have since tried to
put any negative comments from strangers behind me and to keep on moving
forward.
Something I’ve realized about Morphea, is that every persons journey with this
condition is very different. I am thankful to the doctors who remain diligent in
finding treatments that aid each unique journey.

If i’m being honest, I used to shy away from speaking about my Morphea. I
would part my hair to the side and try to hide it. If a stranger asked me about it
or pointed it out, I would change the subject, but with time, i now know it’s
nothing to shy away from. I am now able to tell people that “I have Morphea”
when I’m asked about what’s on my face.

I want to remind anyone with Morphea, or any physical differences or chronic
illness for that matter, that we deserve to be seen fully and completely as
ourselves, and that we don’t need to feel like we have to hide parts of ourselves
to fit in with others. You are loved exactly the way you are.