Hey guys. I'm Siobhan, a 3rd-year medical resident. Today I'm introducing you to Claudia.
She's a woman who's living with a really rare disease that causes her skin and her organs to harden.
I guess it started off when I finished high school and started university. And that's when the
original symptoms had started and those consisted of just the typical like hands that went blue because of Raynaud's.
Claudia later learned that her fingers turning white or blue was called Raynaud's phenomenon.
And it's actually associated with a number of different autoimmune conditions. It happens when blood vessels
spasm when they're exposed to the cold, which limits the blood flow to the fingers.
But before you freak out this could happen to completely healthy people too
and it doesn't mean that you're gonna get an autoimmune disease. It's all about looking for other signs and symptoms.
I had gotten frostbite the year prior to the first symptoms. And so what then happened was after frostbite
my hands started going blue and I noticed these like weird blue spots on my hands and I just...
I attributed it to the frostbite,
I thought the two were related. My face started to change and
actually when my face was changing, I felt this almost burning sensation in the skin on the face and I just thought ''maybe
you know, wrong moisturizer''. All these things that were just one thing after another and then
at that time family members
had noticed a change and wanted me to see a doctor. And you know, I was more busy with school than anything else,
I kind of put it off for a few years. And when I finally did,
instantaneously she had sent me to a rheumatologist, who knew right away it was scleroderma.
So scleroderma is an autoimmune disease that causes thickening and hardening of the skin as well as
internal organs.
So normally our body
attacks bacteria and viruses with antibodies,
but sometimes the body starts to get
confused and it starts to recognize itself as foreign and then attacks itself with
antibodies and that's because it's an autoimmune disease. The truth is we don't really know what causes that.
Maybe there's some genetic susceptibility or some environmental triggers,
but we don't really know why some people develop scleroderma.
Well, if you actually ask ''what does your disease do?'' There are so many different parts to the disease.
I always just start off: Well, you know it builds too much collagen and certain organs in my body
don't necessarily function the same as everyone else. It affects my hands and my face.
So when I first got diagnosed my rheumatologist at the time, she had mentioned that you know...
Build up of collagen and I said: Well can't that be a good thing? Folks pump collagen in their skin.
And so she laughed and said: Yeah, you'll look young forever!
The blood in my extremities doesn't circulate properly, because
the vessels I think have tightened because of the disease. It sets in things like ulceration in the fingers.
Yeah.
And when the fingers end up with ulcers because the blood isn't circulating probably and healing doesn't happen as quickly as it should,
those can become extremely painful. I've actually lost
deterioration in the one finger. Sometimes what happens with some scleroderma patients is they lose mobility in the fingers because it tightens.
So for instance some people it's actually more like clawing.
So there are many different types and a wide range of severity of scleroderma.
So it doesn't always look the same on everyone. For some people it's
finger and maybe some face that are involved and for other people it's just diffusely
across their body. The lungs can harden causing something called interstitial lung disease or they get renal artery
involvement and that can cause damage to the kidneys. It's a huge range. I didn't want
people to look at me like I was sick and I wondered what like, you know... I was dating at the time.
Actually when I first got diagnosed I was in a long-term relationship,
but soon after it ended and then I was dating and I worried what would guys think, you know, do I look different?
I don't want to come across as being sick and that also led to you know...
After a few dates you get to know someone a little bit further and I wondered you know,
how long do I wait before I tell someone that I have an autoimmune disease?!
Yeah.
But lucky for me
I met a very nice man in my early years of teaching and I ended up marrying him. He is my best friend and
he was very compassionate and understanding.
Scleroderma affects young, healthy women and
sometimes it's just the most surreal experience being in a clinic, sitting across from someone who
is just the same as me: same age, you know, had the same hopes and dreams and
they're managing a chronic illness. And I'm sitting across with the stethoscope trying to treat them and I just think: Why? You know,
it just seems like there's no rhyme or reason and
that is such a challenge. It's so hard seeing
that, I don't know. Yeah, that's a big challenge I find.
If you look at the older pictures of me,
you'll see that I had more of a fuller lower part of my face. So I had you know full lips,
my teeth weren't as... They didn't protrude out as much and so that bothered me a lot. Although 16 years ago I got braces.
Oh. Because I thought: Okay, let's try to fix what I can fix.
I was just so self cautious, cuz I'd lost part of... I always never let it bother me.
It was like: This is who I am. But there's always that you know, you're always your worst critic.
My face was one part where I was like, okay. I wish my teeth weren't so obvious.
And so that would be the one thing that if I could change anything about this disease, which is so vain.
I rather would fix my mouth than my hands at this point. There's no cure for scleroderma.
So what we do is we're screening for life-threatening effects, and then treating symptoms as they come up. So in the winter when it's cold,
we might be giving medications to help the blood flow get to the fingers and prevent ulcers or even amputations of the finger.
Or little things like suppressing stomach acid so that when someone goes to sleep,
that the acid doesn't come up their esophagus and then into their lungs which can cause irreversible damage.
There are some experimental treatments going on and some new medications.
Some people are experimenting with stem cells and have some success. But honestly at this point we just still need so much more research
to figure out the best way to treat it. If you could be talking to someone just diagnosed with scleroderma,
what would you want them to know?
Maybe just try to find things in your life that'll help you live your life as best as
you can without necessarily
focus too heavily on the disease. And I don't think the Internet is a good place to look because I think it scares you more than
does good and that there's different ways you can look at the disease, I think. But try to educate yourself, ask good questions,
ask your rheumatologist what form do you have. You know, what can I do on my end
to help better my health? Essentially you don't want it to control your life, right?
You want it to be... Obviously you have it, but you want to try to live your life as normal as possible.
And I always try to look at everything that happens in my life as essentially a blessing.
So it's happened for a reason.
There's something I need to learn and grow from and perhaps I have this disease so I can educate others about it.
Maybe so that I can increase the empathy of my students, you know...
Maybe so that I can learn that, you know with setbacks in life,
there's a you know, the sun will always shine tomorrow. There's there's good that will come. Oh, that's so beautiful. Oh my gosh.
I don't know, like everything can be grim
if you want it to be. But then everything could be a blessing if you let it be.
I really want to thank Claudia so much for being brave, for coming on here and sharing her story.
She is such an inspiration and as you can tell we have a long way to go with scleroderma.
And I really believe that one of the first steps is raising awareness for the disease and for the people that we want to support.
So if you know that somebody who might be interested in Claudia's story, share this video so that they can learn about scleroderma.
And if you want to learn more,
I've left some links below in the description box that I think you might find interesting. As always
I would love to hear from you guys and know what you think.
And so if you don't want to miss any future videos, don't forget to subscribe And otherwise, I'll be chatting with you guys soon.
Bye for now!
