|July 25, 2011||Posted by Jenna under Hope & Apples Campaign, Patient Advocacy Efforts|
Amazingly, two months have passed since AS Awareness month. More projects are coming from many sources and we all have lots to look forward to in the coming months which will prepare us for another terrific AS Awareness month in 2012!
Thank you for the amazing participation and art work for the campaign for Hope and Apples. Together we provided a body of work which did and will bring some wonderful awareness to others. Please keep sending your friends to the page to help them understand our disease better. All of us who participated or shared in the information and project were touched by your submissions and were moved by the strength and courage shown in your personal stories.
A special thank you to Kelly Christal Johnson for her amazing efforts in rallying the AS community around this project and to Rick Powkerwinski for his spectacular Twitter skills. Kelly & Rick worked tirelessly to make this project the huge success that it was.
Hope & Apples was created as a place for people living with Spondyloarthritis to share their stories. It was made by the community for the community. Since Hope & Apples was a small grassroots effort – we are all focusing on our next individual contributions to the AS Community. Thank you all again!
Sending positive thoughts to all of you!
|June 1, 2011||Hope & Apples Campaign|
What an amazing April and May we’ve had! April was Spondylitis Awareness month followed quickly on its heels was World AS Day and we wrapped things up nicely with Arthritis Awareness month ending yesterday with some amazing video entries to the SAA contest! This whirlwind of activity created a year like we’ve never seen with… more
|May 12, 2011||Patient Advocacy Efforts|
Wonderful connections and friendships are being made online everyday by strangers connected by one simple fact – they have a form of spondylitis. Facebook is where I Erin Millard from Vancouver, British Columbia. Erin asked me if I would design a t-shirt for her Diva On The Run – an 8k she ran the end… more
“In the photo I’m not bending over looking at my daughter. I am standing straight up. I am standing tall.”
|May 8, 2011||Spondylitis Stories|
My name is Heather I’m 39 years old. Today,I celebrated Mother’s Day today with my 4 year old daughter and my husband and family. And as you can see by my A.S. Apple photo, I have Ankylosing Spondylitits, spinal fusions,and permanent thoracic curvature. In the photo I’m not bending over looking at my daughter. I… more
“In just 5 weeks we’ve shown that with the right idea and a little bit of elbow grease we are an amazing group of people.”
|May 7, 2011||Hope & Apples Campaign, Patient Advocacy Efforts|
Congratulations! Spondylitis awareness month 2011 has been a whirlwind! The Hope & Apples team would like to thank each and every one of you for your heartfelt stories, amazing apple art, hard work, and the determination to raise our collective voice about spondylitis. Together, with a campaign like Hope & Apples, we captured the attention… more
|May 6, 2011||Posted by Jenna under Hope & Apples Campaign, Patient Advocacy Efforts|
Twitter will be abuzz from 7.00am AEST (Brisbane), 2.00pm (California) and 5.00pm (New York City) with a real time WorldASDay chat The hash tag for the event is #WorldASDaychat !
Sample Topics will include
Q 1: How long did it take for you to get diagnosed?
Q2: Which health practitioner first suspected AS
Q3: How important was the role of your physio in your treatment plan?
Q4: If you could raise knowledge about AS awareness what would be the one thing you would like known about this disease?
“Most days, I’m glad that I don’t look sick. But some days, it would be nice if my exterior did some of the explaining for me…”
|May 3, 2011||Posted by Jenna under Spondylitis Stories|
I am a 22-year-old woman. I’m diagnosed with a fun mix of Psoriatic Arthritis and Undifferentiated Spondyloarthropothy. I fit the diagnostic criteria for Psoriatic Arthritis but I have a few extra symptoms so my rheumatologist saw fit to throw in the USpA label too. Recently, I’ve taken to just telling people I have “Psoriatic Spondylitis” which I guess is accurate too.
I’ll let you in on a secret. It’s not so much because it’s easier to say. Really, it’s because it lets me avoid the word arthritis. Even though I’m all of 22 and it seems it should be obvious that something is amiss if I have arthritis, I can’t count the number of times people have ignorantly assumed it’s the same thing as osteoarthritis. “Oh, my grandmother has arthritis!” is one of my personal favorite responses. I always bite back my snarky response of, “Oh, has she been suffering from it since age 18 too?” but maybe I should start finding a nice way to point out their ignorance. I’m not increasing awareness at all when I passive-aggressively seethe. The irony is that I might be working out with their osteoarthritic grandmother. I regularly attend a chair aerobics class for senior citizens because it’s the best fit I’ve found for staying active and minimizing the resulting pain.
“I’ve decided to set my sights on something that I once thought was absolutely impossible: running a marathon.”"
|May 3, 2011||Posted by Jenna under Patient Advocacy Efforts, Spondylitis Stories, Uncategorized|
Prior to my freshman year of college at the University of Delaware, my lifestyle was active and athletic including playing lacrosse, soccer and tennis. During the course of my freshman year at college, I started experiencing bouts of chronic back pain that limited my ability to partake in these activities that were once very easy and enjoyable for me.
Ultimately I lived with this chronic pain on and off for nearly 15 years and had limited mobility which lasted into my early 30s. At points, the pain and or stiffness would present itself in my neck, chest, hips and lower back, sometimes nearly incapacitating me for days at a time. I also had a few bouts of uveitis, or inflammation of the eye.
|May 2, 2011||Posted by Jenna under Hope & Apples Campaign|
Read all the Spondylitis stories and look at all the apples, then leave a comment, and share or tweet your favorite submissions.
Your votes will be counted one of three ways; facebook “likes”, tweets and comments left on the person’s PAGE. Spam will not be considered as a vote. Each person may give every submission a vote, but the complete entry (must have a story and an apple) with the most combined votes via facebook likes, tweets, and unique page comments generated from the Hope & Apples Website by May 5, 2011 at 12:00am, EDT will win the Apple iPad. (We can ONLY track likes, tweets and comments that appear on www.hopeandapples.com so make sure your votes are COUNTED and entered via this website.) You can email your friends and family and ask them to vote – the more you share our stories with the greater our outreach and awareness!
- The sooner you get in your submission the sooner you can start getting votes.
- Deadline for entry to win the World AS Day prizes is May 4, 2011 at 12:00am, EDT.
- Voting for the World AS Day Giveaway of the Apple iPad ends May 6, 2011 at 12:00am, EDT.
- The winners of both the iPhone and the iPad will be announced during the Global AS You See It Webinar on May 7, 2011 sponsored by the Australian Physiotherapy Association. For more information on the webinar please visit www.worldasday.com.
Best of luck to everyone – not to worry Hope & Apples will continue to find ways to share our stories and Spondylitis Awareness messages and testimonials. This is not the end – only the beginning!
Jenna, Kelly, and Rick
“Doctors need to start taking what the patient tells them to heart… Our stories will have a positive outcome. Our voices will be heard..”
|May 2, 2011||Posted by Jenna under Spondylitis Stories, Uncategorized|
“My name is Denise and I have been inspired by others to share my story. I understand how important it is to bring awareness to such a frustrating disease as Spondylitis. I feel as I write my story for other people to read, it will also bring understanding to myself on how awareness is key to future sufferers. I am where I am today only from pure determination to finding the answers for the symptoms I knew were not normal for my body. The road was long but at the end I feel that I have educated myself and also educated doctors along the way.
Looking back now, it all began in early grade school. I had a foot operation that doctors believed was rheumatoid arthritis. Back then, I guess, there was little knowledge and continuing observation did not happen. After the surgery it seemed to have ended doctor appointments. So life went on as normal. It was not until around middle teenage years when pain, fatigue, and frustration started. I eventually was diagnosed with Lyme’s disease and treated with amoxicillin and sent on my way. Back then you would tell the doctor what is wrong and take the advice of the physician and move on.”