Sarah's Scribbles

The Year of Months

Spots and All

Ok, Dear Readers. I've signed up for another fundraising event. But wait! Give me three more sentences before you stop reading, please.

I'm not saying that causes like the LLS and ACS aren't important to me ('cause they are!), but this is a cause that is as close to my heart as you can get - literally. I have suffered from Psoriasis for the past seven years and it's only getting worse. There is no cure and the treatments not only don't work for me - but have possible fatal side effects.

There, my three sentences are up. If you can move on without reading the rest of this post... well, quite honestly: you have no heart. Or maybe just a grinch-sized one.

Reader's Digest version: I'll be participating in the National Psoriasis Foundation's Walk to Cure Psoriasis on November 6th. Click here to go to my personal page.

I know I've spoken to many of you in-person about Psoriasis, but I don't think I've ever blogged about it. Psoriasis is an immune disorder wherein your immune system randomly attacks your skin cells, manifesting in red scaly lesions. If severe, it can be disabling. Even when mild, it can seriously alter your quality of life. Psoriatic arthritis, which is closely associated with psoriasis, is crippling. For more information, please watch this two-minute video: (BTW: if you're eating, you may not want to press play just yet)



How can you help? You can donate here or - even better - if you live within driving distance of Tampa, please join my team here.
Below is the same text displayed on my fundraising page:

My Story

Psoriasis isn't contagious, awareness is.

I was diagnosed with Psoriasis when I was in college. Since then, I've been living in constant FEAR.

FEAR of developing Psoriatic Arthritis and not being able to enjoy many activities I love. Of living in constant pain.

FEAR of getting kicked out of pools and water parks due to a GENETIC disease.

FEAR of developing one of the many conditions associated with psoriasis like: heart attacks and strokes.

FEAR of social isolation, rude comments and disgusted stares.

The National Psoriasis Foundation has helped me face these fears. In addition to funding genius research that may one day lead to a cure for, not only Psoriasis, but many other diseases of the immune system; they are committed to educating both the public and patients about the condition. They are also instrumental in helping the medical and medical insurance industries understand the disease. (My first dermatologist mis-diagnosed me… THEY don’t even completely understand Psoriasis.)

Thanks to the NPF’s support, I now wear shorts without fear, using any rude comment, stare or question as an opportunity to educate someone about the disease. And I no longer worry about what friends and potential boyfriends think - there is no room in my life for someone who can’t accept me, spots and all.

Here’s another video where America’s Next Top Model CariDee English talks about her experience with psoriasis: http://www.youtube.com/watch?v=jZWVfnXcFAU&feature=related

CariDee was lucky. She found a treatment that lets her manage her disease. Many don’t.

There is no CURE for Psoriasis. There are treatments, but not a single one works for everyone. Treatment is a guessing game - and it’s a dangerous one. With side effects like skin cancer and fatal brain infections, the treatments are often worse than the disease itself.

This is where you come in. The National Psoriasis Foundation depends on donors like you and volunteers like me to fund research and advocacy programs. Please consider making a donation to help the OVER 7 MILLION Americans affected by this disease by clicking on the "Support Sarah!" button to the right.

Also, if you live within driving distance of the Tampa area, I'd be honored if you'd join my team "Sarahtopia" for the Walk to Cure Psoriasis.

6 comments:

I used a babysit (sort of-was more of a mom's helper than actual babysitter) a girl who has psoriasis. I think her's is controlled like Caridee's, but I can't imagine how horrible it would be to live with it unable to control it with any treatments. Will definitely see if I can donate, possibly participate in the walk. I may be moving over that way towards the end of summer but it's not for sure.

 
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Thanks Laura!

It would be awesome if you could make it out to the walk! It would be great to meet you IRL :-)

 

my husband deals with this, and it is SO frustrating for him. He has been to many dermatologists, but nothing seems to work.

His dad also suffers from it, and we worry about our oldest son, who already gets 'itchy spots' at various times of the year.

thanks for this post.

 

I had no idea it could be fatal! Thanks for the info.

 

This is brave to put this out there! I hope they find a cure.