A.S. Face 1363: Jonathan Panarello

A.S. Face 1363: Jonathan Panarello

My name is Jonathan Panarello and I live in Laval, Quebec, Canada. I was diagnosed with AS when I was 19 years old (I am now 27). It was a long couple of years. It started when I was 17 years old and entering college which turned into the worst 3 years of my life. I woke one morning, put my foot down and ended up crawling to my parents because the pain in my feet was unbearable. I had 2 doctors suggest I had cancer, countless X-rays, MRI’s, bone scans, and even a surgery for a plantar fascia release. After the surgery I ended up on crutches for a year and a half feeling hopeless and helpless. One blood test later and I am being sent to Rheumatology and started on Humira. The drug that saved my life! I was able to walk without crutches one day after my first injection. People asked why I didn’t drop out of school while going through all this but I was too heard headed to listen. Now I am fully functional, full time nurse in the cardiac intensive care unit, working on my masters of science nurse practitioner degree, and married! I couldn’t be happier and blame AS for who I am now and wouldn’t change a thing. The picture I am posting is of my graduation in May 2014 from my bachelor of science in nursing degree. My biggest accomplishment and middle finger to AS!
Thanks for starting this great initiative!

Jonathan Panarello

Quebec, Canada

A.S. Face 1336: Jean-François Lacoste

A.S. Face 1336: Jean-François Lacoste











Bonjour,

Mon nom est Jean-François Lacoste. J’ai 54 ans et je souffre de spondylite ankylosante depuis au moins 23 ans. Le diagnostic est tombé il y a 12 ans. Je demeure dans la province de Québec, au Canada. J’ai tout le temps eu de la douleur au bas du dos, sans savoir ce que c’était vraiment. Ensuite d’autres malaises ont apparus soit des douleurs dans les côtes, au sternum et de nombreuses fois, une douleur du nerf sciatique. La spondylite a été de plus en plus présente. J’ai eu une crise d’une durée de 6 mois, touchant les épaules, l’omoplate, le trapèze et les vertèbres cervicales, ce fût horrible. J’ai fait deux uvéites, ne sachant pas trop ce que c’était.

Le matin, le mal au bas du dos est toujours présent. Lorsque je marche, mon corps n’est pas droit. Il penche un peu par en avant, sinon, ce serait l’enfer. Je suis toujours fatigué et je ne dors pas bien. La douleur au bas du dos me réveille à toutes les nuits. J’ai des points de douleur partout qui ne durent pas très longtemps mais qui sont là durant toute la journée. J’ai des douleurs aux hacches et au bassin. Les poignets ne font pas exception. Je ne connais pas le future mais j’espère que les poussées seront moins fréquentes.

I am sorry my english syntax.

- My name il Jean-François Lacoste. I live in province of Quebec, near of Montreal, in Canada.
- I am 54 years and suffering SA there is 23 years .Dx 2002. I have a low back problem each morning and all days.
- Now, I have a pain to my neck, shoulders, wrists, up spine and hips.
- I had two iritis. And I had a sciatic problems for long years.

Quebec, Canada

A.S. Face 1141: Bijillian Dean MacKinnon

A.S. Face 1141: Bijillian Dean MacKinnon

My Story
My story needs some back-story. Approximately six years ago, I was physically attacked leaving me bruised, my arm dislocated, my nose broken, my neck black and blue and chunks of my hair pulled out. I was tortured and beaten for hours and almost strangled to death. When I had finally given up, I saw my late grandmother standing in the doorway and I got the strength to fight back and run into a room where I barricaded myself in and called 911. I survived that trauma physically, but mentally I was worse for wear. That incident led to a PTSD roller-coaster that turned my life upside down. Not to mention the stress of testifying in court (he was found guilty), changing my identity, changing jobs, apartments, etc.. Being a very positive person, however, I tried to turn it into a positive. I started writing a blog documenting my fight against PTSD. My dad was sick at the time so I joined Team in Training to run marathons and to raise funds against blood diseases. Eventually I was bungee-jumping for fun and completing triathlons in Hawaii. I felt like I was finally healthy.
On top of that, I finally figured out what I wanted to do with my life and that was work with children. So I became a nanny and traveled to Sweden with a family. That led to a job at an elementary school where I also met the man of my dreams. We got together and we were quickly married with a baby. Life was, for the first time, perfect! Eleven weeks after I gave birth to our son, I ran a half marathon with my mom in Niagra Falls. A few weeks after that, my husband and I took our baby on a vacation to Prince Edward Island. Within a few weeks I dropped from my pre-baby weight down an additional twenty pounds. I started losing my hair in clumps. I couldn’t stand up right. I couldn’t run far. I had excruciating pain in my chest and in my spine and jaw. I was dizzy, fatigued and depressed. I was very short-tempered too. I couldn’t understand what was happening to me. Why I went from running a half marathon to being unable to lift my son out of his crib. We cut our vacation short so that I could see my doctor. I was sent to many specialists but it did not take long for my diagnosis to be made. A.S.
To be honest, I didn’t know it existed until I was diagnosed with it six very long months ago. My first thought upon hearing the diagnosis was, ‘Arthritis? Am I not too young to have arthritis?’ My first emotional reaction was, ‘Thank God it’s not cancer.’ And that is everybody’s reaction to A.S. and a quick snapshot of how entirely lacking we are in terms of societal awareness of this disease. A.S. and all spondyloarthropathies are chronic and incurable. Often the medication used to quote on quote ‘treat’ this disease leave a patient worse off than before. I am not a doom and gloom kind of person either. I am actually the opposite. I have the kind of mental survival instinct that makes me capable of turning any horrible incident into a meant-to-be reasoning. It is basically my super power. Look at A.S.. Sure I went from doing triathlons, raising funds to fight cancer, running marathons, bungee-jumping and sky-diving to unable to work even part-time, unable to open my baby’s bottle, unable to lift my baby out of the crib, etc.. I am in constant pain and agony. My weight is a battle to keep meat on my bones. My hair falls out. I am anemic, hypoglycemic, thrombocytopenic, neutropenic and I can barely run 5 kilometres now. But I can turn this into a gift. Perhaps I would have been working too much and running too much to enjoy my baby’s first year of life? A.S. forced me to stay home and enjoy every second with my son and our dog. I may go a little stir-crazy sometimes, but if it were not for this disease, I would have missed a lot. Your whole life changes and so does your identity. Even the little things change. I fight everyday to keep any sense of pride when I can’t turn a doorknob or open a can of beans. I try to cover my black circles and dress up my muscle-less body to make it look buffer. I try to pretend that I am ok with the fact that after a lifetime of looking for what I wanted to do in life, I finally found it. I wanted to work with children. And for 2 and a half years I enjoyed every second. It’s not a job when you love what you’re doing right? A.S. took that away from me. My other passion in life was working as a coach and volunteering as one to raise funds to fight cancer. I was starting up my own fitness business. I’m trying to fight back, but so far A.S. has stolen that too.
My goal now is to take the mental determination I possess and fight this disease by spreading awareness and educating those around me on what it is like so that maybe one day it will be a curable disease. And to make my son my passion and my reason to keep fighting.
-Bjillian Dean MacKinnon

A.S. Face 1019: Manon Roberge

A.S. Face 1019: Manon Roberge

This story is both in English and French
Cette histoire est à la fois en anglais et en français
Bonjour, je m’appelle Manon Roberge je demeure à Gatineau au Québec, Canada, de ce que je me souviennent je suis atteinte de spondylarthrite depuis que j’ai 16 ans. J’ai eu mon diagnostique à 30 ans en 2009 et j’ai maintenant 34 ans. Dès la tombée du DX, je ne comprenais pas trop ce qui m’arrivait et mon seul objectif était de savoir ce que j’avais pour ensuite pouvoir tomber enceinte. Ce miracle arriva. J’ai par la suite fait de la physio, mais je me sentais complètement seule à moi même face à cette maladie qui me faisait terriblement peur quand je lisait des informations sur internet. J’ai été suivit par une psychologue et le résultats de multiples consultations fut : De pouvoir rencontrer des gens qui sont atteints de SPA. J’ai donc entamer mes démarches en automne 2012 et étant donné que je n’ai pas trouvé grand chose au Québec j’ai décider de m’en faire un projet de vie présentement, je suis bénévole pour l’Association Canadienne de Spondylarthrite en tant que représentante québécoise. J’ai créé un groupe Facebook purement québécois qui est maintenant à 60 membres. Je suis fière du résultats et les gens se sentent beaucoup moins seuls. Nous organisons notre 2e rencontre en personne le 26 octobre prochain à Trois-Rivière. Je m’implique pour donner de l’espoir au gens et de connaître évidemment ces personnes qui comme moi co-habite avec la SPA.
Mon état de santé va quand même bien, je suis capable de travailler à temps plein et de mener une vie de famille et de m’impliquer auprès de ma communauté pour créer un avenir meilleur.
Mon plus grand message : Ne restez pas seul, et foncez dans la vie.
N’hésitez pas à communiquer avec moi pour plus d’information que vous désirez vous impliquer, faire partie du groupe et bénéficier de l’expérience et du partage des autres.
Manon Roberge Gatineau, Québec, Canada robergemrq@hotmail.com
Hello, my name is Manon Roberge I live in Gatineau, Quebec, Canada, from what I remember I reached spondylitis since I was 16. I had my diagnosis 30 years in 2009 and I now have 34 years. From sunset DX, I do not really understand what was happening to me and my only goal was to learn what I had to then get pregnant.
This miracle happened.
I eventually made the physio, but I felt completely alone to myself about this disease that made me terribly afraid when I read the information on the internet.
I was followed by a psychologist and the results of multiple consultations was: To be able to meet people who are affected by AS.
So I begin my efforts in autumn 2012 and since I have not found much in Quebec I decided to make me a life now, I volunteer for the Canadian Association of spondylitis in as Quebec representative. I created a Facebook group purely Quebecois who is now 60 members. I am proud of the results and people feel less alone. We organize our second meeting in person on October 26 in Trois-Rivières. I mean to give hope to the people and obviously know these people like me who co-resides with the SPA.
My health is still good, I am able to work full-time and live a family life and to get involved with my community to create a better future.
My greatest message: Do not stay alone, and go for it in life.
Do not hesitate to contact me for more information you want to get involved, be part of the group and benefit from the experience and sharing of others.
Manon Roberge
Gatineau, Quebec, Canada
robergemrq@hotmail.com

A.S. Face 0978: Nancy

A.S. Face 0978: Nancy

I am Nancy, from Canada.
I am suffering from AS ever since I was 17. It started with intestine problems. I was diagnosed at 35, when I had uveitis : my doctor finally found with this piece of puzzle.
I was having such a hard time walking that I had to use a cane from age 22 to 29. Then it got worse and worse: difficulty with breathing, rib cage compression, shoulders… I slept for about 6 years only for 2 hours in bed and the “rest” of the night ( 2 or 3 hours) sitting almost straight.
I thought about suicide so many times.
One thing that saved me is that I kept moving. I continued working ( I am a hydraulic hose specialist so I work physically, which was challenging and painful but it was the thing to do and I didn’t know it then but I was poor so I had to survive) 40 to 50 hours a week.
I gained weight and I decided to walk : another good move that helped me. After a couple of months walking every day, I started not to need my cane anymore. I walked further, faster. I got better. Then I decided to go to the gym : the rib cage, shoulders, back and hip pain was vanishing slowly. Then I had uveitis and it is chronic so I lost sight to my left eye.
Then I decided to go further : get rid of the stress. It was obvious for me that stress was making me sick. Almost 2 years ago I started yoga and meditating on a daily basis. It did miracles ! I am 43 now and I run 5 to 6 KM every 2 mornings, I walk 5 to 10 km every 2 other morning. I go to the gym 3-5 times a week to get those muscles strong; Add yoga and meditation, yes indeed, this is a lot of time in my schedule but it gave me back not only my life : I have never felt this healthy in my entire life. Or maybe when I was a kid.
Keep moving and enjoy what you have. The rest might come by itself, naturally. Keep moving.
Quebec, Canada

A.S. Face 0952: K.G.

A.S. Face 0952: K.G.

I was diagnosed with Ankylosing Spondylitis last year. This disease has changed my life forever. I have been in agony for many months. Not being able to walk without excruciating pain not knowing what was my problem and if I was going to end up paralyzed… I couldn’t hold my baby as I wanted. I wasn’t able to keep up with my active toddler. We have both been suffering of this disease and I promised to her that I will always fight until I die. I won’t let this disease get over me.

I got a ”correct” diagnosis in september 2010. I have tried numerous medications but none of them seemed to work for my SI joint. After many months on indomethacin and with a lot of sincere prayers I was finally relieved from the excruciating pain that I had. I am so thankful for this. I always have pain in my mid-back and ribs but my SI joint feels so much better. I will always pray that none of my children will ever have to experience such a thing that is Ankylosing spondilitis.

I am a thankful face of AS.

AS has been teaching ”us” so much about what we should have been thankful before the start of that disease but now I try to be thankful for what AS didn’t take away from me.

Quebec, Canada

 

 

A.S. Face 0766: K.C.

A.S. Face 0766: K.C.

Quebec, Canada 

A.S. Face 0755: Tina Leblanc

A.S. Face 0755: Tina Leblanc

My name is Tina Leblanc and I am 33 years old.
Montreal, Canada

A.S. Face 0511: Liza M.B.

A.S. Face 0511: Liza M.B.

Hello my name is Liza,
I am 28 years old, I am from Montreal, Canada.
I was interested in being included in the faces of A.S.
I suffered many years of pain, saw many doctors and nobody could ever find out what was wrong with me. I finally got diagnosed in February 2012 with Ankylosing Spondylitis and Fybromialgia. I always try to raise awareness with these ‘invisible illnesses’ and being part of the faces would be a fantastic way of feeling like i belong somewhere.
I have an encouraging quote to put along with my picture, which describes me very well :  ‘’I always do my best, no more, no less!’’  I rely on that quote alot because alot of people don’t understand A.S and they think i am a lazy person, or that i get discouraged fast, when in fact i do what i can without overdoing it!
So thank you for creating such a wonderful ‘world’ where we can all feel accepted.
Liza M.B.
Montreal Canada

A.S. Face 0083: Gilles Hébert

A.S. Face 0083: Gilles Hébert

Hi my name is Gilles i’m from Quebec,Canada.I’m 46 years young. I’ve been diagnosed with AS 2 years ago but desperately looking for answers for the past 14 years.
I’M currently under Embrel and Methotrexate but not getting the full results yet. Although pain is a big part of my life , i try my best not let it show. Sometimes i succeed , sometimes i don’t.
On this picture it was a good day. You get to really see my face …. not my pain.
Gilles Hébert
Quebec, Canada