6 Years

•October 8, 2017 • 7 Comments

 

Six years ago today I posted the very first post on this site.

Happy 6Th Anniversary to the Faces of Ankylosing Spondylitis!

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Facing AS Together

•September 28, 2017 • Leave a Comment

Dan Reynolds Interviews Cookie Hopper

Who happens to be Faces of AS 0062 

and the creator of The Faces of Ankylosing Spondylitis

Click here to see 

Dan Reynolds Interview with Cookie Hopper

Dan Reynolds Interviews Charis Hill

•September 28, 2017 • Leave a Comment

Dan Reynolds interviews Charis Hill

Who happens to be Faces of AS 0914

Click here to see 

Dan Reynolds interview with Charis Hill

Dan Reynolds Meets Richard Howard

•September 28, 2017 • Leave a Comment

Dan Reynolds meets Richard Howard

Who happens to be Faces of AS 1001

Check out Dan and Richard’s interview here

 

Dan Reynolds meets professional chef Helgi Olafson

•September 28, 2017 • Leave a Comment

Dan Reynolds meets professional chef Helgi Olafson,

who happens to be Faces of Ankylosing Spondylitis 0461

Click here to see the interview between 

Dan and Helgi!

THIS AS LIFE

•September 16, 2017 • 2 Comments

THISASLIFE.COM

 

ThisASLife website is the work of NOVARTIS, Spondylitis Association of America and Dan Reynolds, lead singer of the Grammy Award-winning rock band, Imagine Dragons and many Ankylosing Spondylitis Patients, real people.  Many of them even happen to be participants of our project The Faces of Ankylosing Spondylitis.

We have come together as a community and managed to put a Face to Ankylosing Spondylitis disease but their work is allowing the world to see the Ankylosing Spondylitis community as human beings, for me personally this is the most amazing thing since the invention of chocolate!

This website and the work that is being done is amazing! I love reading the articles they share, so informational and hits so close to home.

Let me introduce the contributing editors or experts on the site, you may just recognize a few!

Michael Mallinson portrait by David Cooper

DAN REYNOLDS
AS PATIENT

Dan Reynolds, lead singer of the Grammy Award-winning rock band, Imagine Dragons, was diagnosed with AS when he was 20 years old. Like so many others living with the disease, Dan’s path to diagnosis was not an easy one. His band was just gaining popularity when his symptoms first appeared, and the severe pain made it difficult for him to perform on stage. After finally receiving a proper diagnosis, he has been able to successfully manage his symptoms and get back to doing the things he loves most. Dan is dedicated to raising awareness of AS and supporting the patient community.

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ADI AHARONIAN
AS PATIENT

Adi Aharonian is a 19-year-old student, living in Northern Israel, who was diagnosed with AS five years ago. Despite the limits of her condition, Adi still maintains a busy social and family life, revolving around reading, dancing and cooking.

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PRISCILLA TORRES
CHRONIC DISEASE PATIENT

A nurse and ‘social mobilizer’, Priscila Torres has been living with chronic pain for almost ten years. Founder of the blog Artrite Reumatoideand the #TwittAR social media movement, she is a leading advocate for patient empowerment and support across Brazil. Priscilla now divides her time between another three projects that she founded, the EncontrAR and Grupar RP patient groups and Health Bloggers, an online social empowerment project.

Michael Mallinson portrait by David Cooper

MICHAEL MALLINSON
AS PATIENT

After a ten-year struggle from onset to AS diagnosis, Michael Mallinson joined the Ontario Spondylitis Association (OSA) looking for support. Having gone from ordinary member to Fundraising Chair to President of OSA to president of the Canadian Spondylitis Association Michael is one of Canada’s leading AS patient voices. From his senior role with the Canadian Spondylitis Association to his work with the Ankylosing Spondylitis International Federation, Michael has been at the forefront of change in AS care over the last ten years.

Now retired, Michael dedicates his energy to charitable fundraising and education on the burdens of AS, all to make sure that those now diagnosed with AS don’t experience the same challenges he did.

SAMUEL OLIVEIRA
AS PATIENT

Diagnosed with AS ten years ago, at the age of 27, Samuel Oliveira has become one of Brazil’s foremost advocates for AS patient rights. Through his blog and Facebook group, he provides information and support to thousands of AS patients as well as serving as a founding member of EncontrAR, a support group for patients with rheumatic conditions. Despite the challenges of AS, Samuel has maintained his chosen career in physical education, working as a swimming coach and personal trainer.

BJILLIAN MACKINNON
AS PATIENT who is also a Faces of AS.   A.S. Face 1141: Bijillian Dean MacKinnon

Diagnosed with AS just four months after giving birth to her son in 2013, Bjillian MacKinnon had to adapt quickly to both being a mother and an AS patient. She approached the challenge with the positive attitude developed during her career as an educator for children with behavioral issues and her time as a marathon and triathlon athlete.

Bjillian now works as an Education and Development Specialist at The Arthritis Society and sits on several arthritis-related boards and committees across Canada. A strong believer in fitness as a tool, she recently trained 16 people with arthritis to complete their first sprint-triathlon in 2015 and has become an enthusiastic AS ambassador.

ROBIN BRITTAIN
AS PATIENT

Diagnosed with AS 25 years ago, Robin has a strong interest in all aspects of AS care ranging from genetics to physiotherapy. As well as taking part in the NHS Expert Patient Programme, he has contributed to AS research at institutions including The Royal Hospital for Rheumatic Diseases, Bath; Oxford University’s Nuffield Orthopaedic Centre and the University of Alberta.

Most recently, Robin has been a patient representative at The British Society for Rheumatology, helping form guidelines for the use of biologics in treating axial spondyloarthritis (including ankylosing spondylitis).

KIRA LYNNE
PROFESSIONAL COUNSELOR

Kira Lynne is a Life Coach, Professional Counselor, and Registered Holistic Nutritionist, based in Vancouver. She has lived with chronic pain and illness for over 20 years, and it was her journey to find answers that led to her book, Aches, Pains, and Love: A Guide to Dating and Relationships for Those With Chronic Pain and Illness. Kira is active on Twitter and Facebook, as well as having her own website.

PHILIP ROBINSON
CONSULTANT RHEUMATOLOGIST

Dr. Robinson is a Consultant Rheumatologist working at the Royal Brisbane Hospital in Australia. As well as treating people with AS and conducting trials of new AS treatments, Philip has recently completed a Ph.D. focused on the genetics of AS.

He is particularly interested in how to diagnose people with AS earlier in the course of their disease, using better tools and diagnostic criteria. Dr. Robinson discusses lots of rheumatology topics, including AS, on Twitter and on his blog.

RONAN KAVANAGH
CONSULTANT RHEUMATOLOGIST

Dr. Ronan Kavanagh is a Consultant Rheumatologist based in Galway, Ireland. He is a medical writer and blogger, plus a social enthusiast and vlogger.

RICHARD HOWARD
AS PATIENT who is also a Face of AS  A.S. Face 1001: Richard Howard

Richard Howard has been living with AS for 26 years. He is a steadfast advocate for people living with AS, having founded a support group in Los Angeles, California where he lives, and serves as the Associate Executive Director of the Spondylitis Association of America. Richard is a devoted husband, father of two, and even a certified Yoga instructor!

CHARIS HILL
AS PATIENT who is also a Face of AS A.S. Face 0914: Charis Hill

Charis Hill is an active advocate for arthritis, autoimmune and chronic diseases. She was diagnosed with AS in early 2013, and now leads the Spondylitis Association of America Support Group in her local Sacramento, California.
She works as a fundraiser, event planner, and valet bicycle parking lead for Sacramento Area Bicycle Advocates, and is also a professional model.

TOM O DWYER
PHYSIOTHERAPIST

Dr. Tom O’Dwyer is a practicing physiotherapist with international experience working in a major teaching hospital in Dublin. He recently completed his Ph.D. in Physiotherapy with his thesis “Physical Activity and Physical Fitness in Adults with Ankylosing Spondylitis”.

MELONI THOMPSON
AS PATIENT who is also a Face of AS A.S. Face 0256: Meloni Thompson and A.S. Faces Mascott “Bailey”

Meloni Thompson was diagnosed with AS over 10 years ago. A mother of two and avid blogger, she lives in Atlanta, USA, with her husband Lang and bulldog Bailey.

SHASHANK AKERKAR
CONSULTANT RHEUMATOLOGIST

Dr. Shashank M Akerkar is a Consultant Rheumatologist at the Mumbai Arthritis Clinic and Research Centre in India. Describing himself as a ‘patient-centric Rheumatologist’, Dr. Akerkar regularly tweets and blogs on a range of rheumatology topics (including ankylosing spondylitis). He is also the creator of an app specifically for patients with lupus.

FIONA WILSON
PHYSIOTHERAPIST

Dr. Fiona Wilson is an Assistant Professor at Trinity College Dublin and a qualified physiotherapist; with over 25 years of clinical and research experience. She works with Tom O’Dwyer. Among a range of shared research interests, together they’re investigating the positive effects of physiotherapy for people with AS.

GILLIAN EAMES
AS PATIENT who is also a Faces of AS    A.S. Face 0208: Gillian Eames

Ankylosing spondylitis has lived with me for 30 years. Helping others with AS is so important to me as I remember the isolation I felt after first being diagnosed. I don’t wish that on anybody. I can now confidently say I am in control of my AS and that it is not in control of me. Positivity has helped me more than anything and I can’t wait to help others alongside This AS Life.

Are You Up For A Challenge?

•July 8, 2017 • 1 Comment

July is going to be MY month! Not only because my birthday is in July but because I have something exciting that will be happening sometime during this month….but that is for a later time.

I have been working on The Faces of Ankylosing Spondylitis since October 8, 2011 and will be coming up on our 6 year anniversary.

Six long and amazing years dedicated to this project, and you all have been so amazing. This project has been honored by the Spondylitis Association of America, it has been recognized globally and so many other wonderful things! But………..

I still haven’t reached my goal, well not my goal but Michael Smith (creator of Spondyville) challenged goal and of course I accepted the challenge.

As of today we have 1788 Faces of AS we are ONLY 912 away from the goal of 2700 Faces!

So as people who live our lives with an invisible disease our goal is to bring awareness, raise funds for our foundations who work hard to raise awareness, funding for research and many other wonderful things.

So I have decided that I am going to combine all these things into one challenge.

I will and agree to donate up to $912.00 to these wonderful organizations. One face and one dollar at a time!

Here is how it will work.

For every person who sends me their photo with or without their story, they will add the organization of THEIR choosing for me to donate one dollar in their honor.

Spondylitis Association of America, National Ankylosing Spondylitis Society, Walk AS One, Arthritis Foundation. ? ? ? ?
IT IS YOUR CHOICE!

You must include the name of the organization in your email when you send your information to me at CookieHasAS@aol.com

I will honor this challenge till we reach 2700 Faces of AS.

I know it doesn’t seem like much but when these organizations are funded and operate by donations EVERY SINGLE DOLLAR COUNTS!

 

So who is up for the challenge?