Tuesday, June 9, 2015

Have You Heard of Scleroderma?

Hi guys,

I wanted to tell you about someone that I don’t think I’ve mentioned before on the blog. Her name was Matina “Tina” and she was Mr. Fix-It’s mom. I met Tina a long time ago at one of the most special places in Halifax, Nova Scotia. It's called The Waegwoltic Club. It’s a swimming, tennis and sailing club for families. It’s amazing! It’s the kind of place where you would see your parents at the beginning of the day, and then at the end when you’re filled with sand, water-logged and sun-kissed. It’s a safe, friendly, beautiful place and my family would spend our summers there. It's there I met Mr. Fix-It and his family when I was 12 years old. Although Mr. Fix-It and I didn’t date from when we were 12 (obviously!), we always hung around. Every summer. We swam on the same swim team, travelled in the same pack, had summer teenage “love drama” and then I would go back to Ontario at the end of the summer and we would re-unite again the following summer.

Over the years, I got to know his mum and dad very well. A fantastic couple that loved their family very much. Tina had a disease called Scleroderma. Heard of it? Probably not. Scleroderma is an autoimmune disease with no known cause and no cure. It’s very rare and affects only 1 in 906 people, mostly women. The body’s own system attacks the tissue. Tina had it for a long time and in 1998, Tina died at the age of 50. Mr. Fix-It was 19, his brother 24 and his dad was now a widow. As any story, when someone dies too young, it was heartbreak.
I really love this photo. Tina gave it to Nick's dad when they were dating. Love how she signed it.
I was 18, the last time I saw Tina and she said to me, “Ali, I know you will marry my son”. I’ll never forget those words and she was right, seven years later I did.
There are many diseases out there like Scleroderma that are rare, vicious and most people don’t know anything about them. It’s incredible how the research has advanced since Tina was diagnosed, however because so few people are aware of the disease, researchers don’t always get the resources they need.

However, I was so happy to hear that June is Scleroderma Awareness Month. Neither Mr. Fix-It nor I had any idea until now. Tina’s birthday was also in June (just this past weekend) so it seems fitting.

If you are interested in learning more about Scleroderma, you can read about it here and I encourage you to take the pledge to tell one person about it. It has no cure and we need to find one.
We talk about Tina to our kids as they sometimes ask why Daddy doesn’t have a mom. It’s a hard thing to explain to little ones and Mr. Fix-It’s heart swells with sadness when he has to tell them why. However, her gentleness lives on in her son and she would be so proud of everything that he is.

Keep it Beautiful.
“Disclosure: I am part of the Scleroderma Awareness
Campaign with Influence Central and I received
special perks as part of my affiliation with this group.
This is a disease that is near to my
heart and I want you to know about it.
The opinions on this blog are my own.”

16 comments:

  1. I'd never heard of it either! Thanks for sharing - Misty

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  2. Thanks for sharing your story Alicia. You can count me as one more person who's now aware.

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  3. I have never heard of Scleroderma before either, thanks.

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  4. I had never heard of this condition before. Your graphic shows it has many horrible side effects. Thank you for raising awareness!

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  5. Thanks for sharing your thoughts Alicia. It was nice to learn about your MIL - clearly she was a lovely lady who left too soon. Hope you don't mind, I shared your blog posting on the Scleroderma FB page. Hope to see you guys at next years walk!

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  6. Thanks for sharing Alicia. One of my close friend's mother had this disease while we were growing up. Unfortunately, she passed far too early as well. I'll be more than happy to share your post on my FB page to keep awareness up.

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  7. Had no idea. So good to know!

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  8. That was beautiful. Thanks for sharing.

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  9. Thanks for sharing Alicia - I had no idea until your post. Have just shared to Twitter to continue upping awareness.

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  10. Thanks everyone for all your support. There are so many diseases out there like Scleroderma. It's important to educate people about them so that they are aware, empathetic and fight for cures.

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  11. Thanks for making us aware of this disease, Alicia! I did not know that this disease existed. I'm glad you met such a wonderful person, and that your life became better for knowing this amazing woman.

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  12. I have never heard of it. It's nice that you are sharing and we learn about this disease.

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  13. It's an excellent Malibu wedding venue, right in the heart of the city near public transportation. They have coat hangers right at the entrance where you can leave your coat, and a lobby where you can set up some cocktail tables.

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  14. Thanks for sharing this - I do not know anyone affected by Scleroderma, but I have heard about it before.

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  15. Thanks for sharing... My name is also Tina and I was diagnosed December 23, 2013. I have made it my goal to spread awareness about scleroderma.

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  16. I was diagnosed with this miserable disease almost 2 years ago. I was fortunate to be diagnosed within 1 year of my symptoms starting. It's so rare, most doctors don't test for it and the average time to diagnosis can be 3 to 5 years or never. It can happen in families. We're pretty sure my mother had it and died from it. The docs knew she had "something" that was killing her one organ at a time but never figured it out. She died not knowing what was wrong with her. Because I was diagnosed early, we should be able to slow it down a bit. Thanks for sharing Tina's story. It helps to get the word out. :)

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