Friday, May 7, 2010

Spondylitis Awareness & How To Help

After the Spondylitis Association of America (SAA) graciously reviewed my blog on their Facebook and Twitter pages (exciting!), I took some time exploring the site which I haven't done in a while. I learned that April was Spondylitis Awareness Month and that SAA hosted a video contest to promote awareness about the disease. Pretty cool idea. Two videos in particular caught my eye that I'd like to share...(Note: I haven't quite figured out video formatting yet, so if you can't see the whole video just click on it and it will pop out.)

I thought this one was great! After someone says, "You have Sponda-what??" I usually stumble over my words while attempting to explain it. Maybe next time I'll just show them this video - it's clear, direct and says all it has to in a little over a minute:

This one made me tear up a little, hearing it from the mouth of a lovely little girl. Of course it hits very close to home with me and my own childhood experiences, but I think it would be touching to anyone:

So...the past two weeks have been filled with one exciting blog-related thing after the next - the most exciting being all of these comments from my new readers! This was exactly my purpose in starting "Loving With Chronic Illness" - to connect with strong and wonderful people and hear each others stories. Thank you to everyone who is supporting this project! I'm profoundly moved to know that my words mean something and, for one reason or another, they are resonating with you. Please stick with me because you make it worthwhile :)

That being said, I'd like to make a little plug, so bear with me! Whether you're someone living with Spondylitis, someone coping with another chronic illnesses or you are lucky enough to have your health, I'm asking you all to consider SAA's mission in finding a cure for Spondylitis. if you are moved by my story, the videos above or the website, please consider becoming involved in some way. Whether it's monetarily or just by spreading the word, there are several ways to help out.


1.) Emotional Support: Really, this is the best thing you can do for people living with Spondylitis or any chronic illness. If you know someone battling a disease, offer your friendship, support or assistance when it's needed. Many people who are living with Spondylitis sometime have trouble asking for help. I know I like to be as independent as possible, but a little help can go a long way. Don't make a big deal about it-it's awesome if you just take note of the little things. Help open jars, bottles and doors. Offer to carry a heavy bag, extend an arm if someone is having trouble getting around, and most of all provide an ear to listen. I'm blessed to have friends and family that do just this and make life much easier for me. Trust me, it means the world.

2) Educate Yourself and Others: Spend a little time on SAA's website reading about Spondylitis and related diseases. Really learn about this disease. Take it one step further and tell a friend - tell five friends. Take the delighted housewives to the left, for example- they must be discussing Spondylitis, right? Okay, okay. It might not be the most popular subject at a party, but you'd be surprised how receptive most people are to learning. If there's one thing I've taken away from my advocacy course in my social work program, it's that awareness is a crucial step in reaching change.

3) $ Donate Some Money $:
I just know the guy to the right is giving that all to SAA! What a guy. But really, any little bit counts (a dollar from each person out there would go a long way). There is even an option on the website to donate money in someone's honor and anything you can offer will help push doctors and researchers one step closer to a cure. What a life-changing day that would be.
Oh and if you donate, I'll try to find you those cool money glasses as a reward. Just upping the ante a bit.

4) Buy Some SAA Merchandise: If you want to combine ideas 2 and 3, you can support SAA monetarily by buying a pack of Spondylitis bracelets (sold in packs of 10). Not only are you making a cash donation, but you're helping spread awareness every time you wear them and gaining a stylish new accessory ;) If you're a coffee drinker, consider purchasing a cool SAA mug for the same reasons!

5) Help Spread SAA's Message Via Social Networking Sites: Become a fan of SAA on Facebook, post a link to the website on your own Facebook, Twitter or MySpace pages and just help get the word out! These sites can be really powerful tools (hey, that's how I've found most of my beloved readers).

6) Get Your Company Involved: Many employers have programs in place and are willing to match charitable contributions made by their employees. Does your employer match gifts? Check here to see if your company could double or even triple your contribution to SAA! I can only assume the boss in this cartoon is referencing a cure for Spondylitis...

7) Become a Mentor: If you suffer from Spondylitis yourself, consider becoming a mentor for a newly diagnosed patient through SAA's Network of PEERS (People Educated and Empowered to Rise above Spondylitis). The purpose of the program is to assist people newly diagnosed with mananging some of these challenges, finding a support network and learning how to cope with the challenges posed by the disease. If you are a newly diagnosed patient and wish to become a Mentee, also check out the page for details on how to enroll in this awesome program.

8) Donate Your Junker: Got an old, unused car, motorcycle, boat or other vehicle crowding your driveway? How about the old garage? If you're willing to part with it, you can generously donate your vehicle to SAA and 70% of the proceeds from reselling it will go directly to SAA for research, patient services and educational programs for Spondylitis. The website assures me that the process is quick and easy, includes free pick-up or towing and that all donations are tax deductible. Best of all, it's an awesome way to support a great cause!

Get Creative! There are countless ways to help SAA and many haven't even been thought of. So that's where you come in. Some of the greatest change comes from individual people, so let's put our heads together! Bake sales don't have to be a thing of the past. Neither do walk-a-thons or car washes. Any little bit helps and we need people just like you to help find a cure.

Thanks so much for reading!



  1. maya, thank you for your courage to share. i was recently diagnosed and am experiencing a range of emotions. i am so frustrated at how little research and funding is out there. with more awareness and people like you, we can make this a higher priority in the research world!

  2. Hi Babsy :) Thank you for your supportive comment. When I get frustrated, I try to remind myself of all the medical advances out there (my boyfriend who is in the medical world tries to keep me hopeful about this). Let's spread the word together