A.S. Face 2142: Suelita van Breda

A.S. Face 2142: Suelita van Breda




I am in Cape Town, South Africa and am part of various AS groups on Facebook, eg. AS in South Africa , Ankylosing Spondylitis, The face of Ankylosing Spondylitis, etc.
I was diagnosed with RA at 25, started treatment i.e. Methotrexate, Salazopyrin, Celebrex, folic acid and went into remission within 2 years. I was symptom free for approximately 15years. Then at 42years old I woke up one day and I could barely walk. Started Biologics, had bilateral knee Replacements, and now on my 3rd Biologic, Simponi. I am 45years old now and been on Medical Disability for a year now.
I would like to create more awareness of AS as it is clearly lacking in my social and professional circles.
South Africa, Africa

A.S. Face 2140: Barbara Nothnagel

A.S. Face 2140: Barbara Nothnagel


My name is Barbara Nothnagel from Vereeniging, South Africa.

I was diagnosed with AS in April 2018.
I had my second back fusion (L4-S1) 2 months after my diagnoses.

I’m also fighting a HARD battle along with my fellow AS Warriors however I will NEVER give up fighting!!

A.S. Face 2049: Samantha Van Huyssteen

A.S. Face 2049: Samantha Van Huyssteen



My name is Samantha Van Huyssteen and I suffer from Ankylosing Spondylitis and Rheumatoid Arthritis, I am 32 years old and I stay in Cape Town South Africa

From a very young age, I always suffered from back pain, I was in and out of Doctor’s offices with dislocated tail bones. I pushed through my pain and thought to myself it can’t be anything severe I am so young and healthy. This continued on for a few years until finally, I discovered a Doctor who was willing to go the extra mile for me. I had many days where I could not get out of bed I had to call my sister to come and help me get out of bed and assist with bathing me, the pain started coursing through my body to my joints each day becoming more severe and stiff. My Rheumatologist has been incredibly supportive through my struggle I was finally diagnosed with Ankylosing Spondylitis and RA four years ago I am now 32 Years old. I have gained so much weight from all the medication and last year I was losing my will to live I became I recluse, staying in bed crying almost every day the pain was unbearable and no one around me could understand what I was going through. I have decided that this year my disease will not get me down with the support of my family and friends and these amazing support groups I will prevail. Even after being admitted to Hospital with Kidney Stones in January

South Africa, Africa

A.S. Face 2030: Derryl Cammidge

A.S. Face 2030: Derryl Cammidge

A.S. Face 2009: Sherene

A.S. Face 2009: Sherene

A.S. Face 1956: Lindi Van Staden

A.S. Face 1956: Lindi Van Staden




I live in  South Africa and here not a lot of people know about AS.

A.S. Face 1720: Idelette van Vuuren

A.S. Face 1720: Idelette van Vuuren

A.S. Face 1689: Michelle Ramsay

A.S. Face 1689: Michelle Ramsay

I am 24 and diagnosed a year ago. I am still struggling to get proper treatment.

A.S. Face 1661: Shahzad Ellahi

A.S. Face 1661: Shahzad Ellahi

I start my AS at age of 17 and in early start pain in hip then it go up and knee. All my 20s struggling with pain. I diagnosed AS in 30 but doctor just diagnosed but not tell about AS. The. I go another doc where he explain me AS and tell what to do. with exercises stretch and physio therapy I feel much better. I feeling my conditions much better then my 20s. Now I m 33 and I can run play volleyball in 20s it my dream to run and play.

A.S. Face 1611: Cindy Colyn

A.S. Face 1611: Cindy Colyn

I’m from South Africa and  we don’t have a lot of support groups for AS. I ‘ve had this disease for 16+years been on all meds possible every Dr I went to in this time and only 2 months ago I was given a sure diagnoses for once in my life I don’t feel as if I’m coocoos and at least know what is wrong with me as I’m writing this I’m in a flair and its bad.
South Africa, Africa

A.S. Face 1570: Carol Janse van Rensburg

A.S. Face 1570: Carol Janse van Rensburg

My name is Carol Janse van Rensburg. I live in  South Africa. I was diagnosed with AS in May 2013. I have been struggling with lower back pain most of my life but the last few years the pain has moved to my mid back and neck area as well as my ankles knees and wrists. there is not a day that goes by that i am not in pain. some days are more than others. other parts of my body have been affected such as my eyes, mouth and glands. the last few days my feet and ankles are swolen badly and any sores that i get takes forever to heal.

I am currently on various medicines but my Rheumatologist wants me to use Humira. the problem i have is that my current medical aid does not cover the cost. i have to increase my medical aid plan but its difficult due to financial reasons. i am paying for my sons universaty fees.

i can only hope and pray that all will be well. some people say its all in my head and i have withdrawn myself from most people as i dont want to be seen as someone constantly complaining.

i do however feel and empthasize with fellow AS sufferers as people in general dont know what your pain and suffering entails.

i still  keep faith that my God heals and will keep on believing that i will become better.

Thank you for your blog. its comforting to know that others also experience the same. unfortunately some more than others. i pray that we will be overcomers and will place this disease under our Feet.

South Africa, Africa

A.S. Face 1557: Victoria

A.S. Face 1557: Victoria

Hi, my name is Victoria and I have ankylosing spondylitis (sounds a little bit like going to an AA meeting and saying “and I’m an alcoholic “,doesn’t it?)

I was diagnosed with AS when I was 15.

 For a disease that supposedly primarily affects men,  my family did not apparently read the rules. For every single woman born into that bloodline, we are all affected by AS or fibromyalgia or both. The men experience nothing.

I was the youngest to be diagnosed.

That was actually only a year ago.

It started as a horrible pain in my left knee then to my whole left side and finally to the rest of my body.

The pain is excruciatingly sore for most days and I miss quite alot of school although I am trying extra hard to keep the marks up.

 Good days are characterized as the days when I can actually get up.

 Bad days are pretty much everything else, to the point of crying out, getting sick and having close to no sleep because even the blanket that was supposed to be a comfort only makes it worse.

 South Africa, Africa

A.S. Face 1479: Christelle

A.S. Face 1479: Christelle 

My name is Christelle , 39 years old, from the little island of Mauritius, in the Indian Ocean (just in case you never heard about Mauritius :)
I have been suffering from lower back pains since I was 16 years old… pains becoming more and more severe as the years were passing! Have seen many doctors but none of them could put a name of what I had… was even said that it was all in my head!!
I got married to a wonderful man, Gerald and in August 2002 gave birth to a little girl, Marinne…
Unfortunately, since then the pain increased and in 2004, I saw a Rhumatologist and finally after blood tests done, was diagnosed with an Ankylosing Spondylitis!
Since then, have been on different classical treatment but none really working! More and more everyday life is becoming harder and harder! I hardly sleep… I continue my exercises but still pain is unbearable! The sacro-illiac joints are more and more painful as well as other parts of the body. Have had to reduce time of  work, was a Personal Assistant… I go when I can… My bosses are very understanding and they support me…
I have been blessed with another little girl in 2005, Alizée… Premature because I was suffering too much so we had to induce the birth… her first years have been hard… often sick but she is a fine little lady now…
My doctor wants me to go on Humira treatment, but unfortunately financially that’s impossible for us. As you know its a very expensive treatment and we dont get help from government for such treatment…
Anyway, life is hard but I want to hang on… I have been blessed with a wonderful family and I do not loose hope that one day all this will be behind me… I am surrounded by family and friends and my faith in God keep me going!
I am happy to share my story with you as I know you know what I face each day…
Thank you for having read me… I have cut a long story short though! But thank you…
Cordially
Christelle

A.S. Face 1391: Stephanie Wood

A.S. Face 1391: Stephanie Wood

My first symptoms started in February 2008 before my motorcycle accident in March 2008. I did not link the symptoms until many years later at my Rheumatologist Appointment.

I went to about 20 doctors and 2 Knee and Back specialist before my GP in Melkbosstrand, South Africa made a comment about it and booked me with a Rheamy in May 2013. When all the blood test came back I was crying, I was relieved to know that this wasn’t in my head as so many Doctors told me, there is a name and I started doing research. What started out as everyone blaming my Bike accident and imagining the pain started before the time always made me upset,  If they only listened, if they only knew. After my diagnoses I felt like phoning all those OLD Bags and telling them they were wrong all this time! But I didn’t.. I just wanted to start treatment and be my old self again.

I was put on Salazopyrin immediately but it did not help and in March 2014 we started with Enbrel, to my horror I was allergic on my second shot and we applied for Simponi. I have been on Symponi for 7 months when I saw a second Rheamy due to me moving away (NOT BY CHOICE, WORK!) and no improvement, I have been worse off than before. I have pain pills prescribed and other anti-inflammatory but they don’t help me with Flare-ups. Keeps me going from day-today.

We have applied for Humira which seems like a lifetime to wait!! What is the most frustrating is trying to explain to family, friends and colleges. Being booked off sick and feeling so so guilty about it, when I can barely walk, when I can barely take a deep breath because my ribs hurt so badly, having chronic continuous non-stop Achilles tendinitis in both ankles and my Femur hurting so bad and burning non-stop. Left knee always swollen, back and neck pain, not to mention Fatigue.
We don’t ask for sympathy, we ask for understanding.

Education is so easily accessible that Google seems to be a Math Solving Mystery problem because people are too ignorant to do research about A.S. Rather going oooohhh aaaahhhh, wow I’m sorry, never heard of it, hey take these supplements, just go to the gym, lose weight.. You are eating wrong cut out Gluten cut out red meat.. Like my medical bills aren’t enough they wanting me to get MORE PILLS!!! REALLY… The hardest part of this disease is you cannot see it most of the time, you don’t look sick .. You don’t look sick.. To be honest, this disease has made me a different person, who hasn’t changed because of A.S.

I do count myself lucky that my disease has not progressed like most people but I found out last week my hands are also affected making it difficult to drive.

Thank you Cookie for this Page and reading every ones stories is something that has helped me a lot in weeks like this. We keep going and we refuse to give up.. My mom, Surita has been my rock and no matter what she has understood, she went with me to my appointments even driving me when I could not. She will never realize what it means to me because words can never explain what an Amazing Mother she is.

Thank you for giving me the chance to tell my story.
Much Love
Stephanie Wood
Bloubergstand, South Africa, Africa

A.S. Face 1361: Serita Singh

A.S. Face 1361: Serita Singh

My name is Serita Singh and I am a 21 year old post graduate law student at the University of Witwatersrand!
I was diagnosed with AS when I was around 18 years old but had already been experiencing the symptoms since I was about 14! I blamed my lumbar pain on so many things over the years- from a pinched nerve to strain caused by sports extra murals during high school. I tried almost every treatment under the sun; acupuncture, physiotherapy, chiropractors, electrotherapy and even homoeopaths! Sometimes I would walk out feeling like I’d been cured completely and other times I’d walk out in tears from all the pain (chiropractors are a definite no no for me!)
In 2010 I remember not being able to fall asleep one night because the pain was so severe, I tried getting out of bed at 2am to tell my parents that I’d be unable to get through school that day but I couldn’t even manage the walk from my bed to my bedroom door. I broke down that night, I sobbed uncontrollably because I felt so helpless. To be so young and unable to do something as basic as walking! After wet pillows and some strong pain killers I decided enough was enough, something needed to be done!
I got tested and diagnosed after my final year of high school and before my first year of study at university! Finally I was headed in the right direction!
The reason my story is a bittersweet one is because of my mother. My mom suffers from AS too, but of the upper vertebrae unlike me and has already lost most of the mobility in her neck, back and shoulders. She was diagnosed not long after I was born and has been in incredible pain ever since. We have the same Doctor who recommended that the both of us start a course of Humira as soon as the necessary tests had been done and approved. Humira is extremely expensive though and our medical aid would be heavily burdened paying for two prescriptions so my mom gave up her application so that I could be covered for it completely! It is because of her love and sacrifice that I can say I’ve been living pain free for the last year now. I inject myself every two weeks and all symptoms of AS disappear- like magic! Although I feel like a brand new person it breaks my heart seeing my mom in so much pain and I would give anything to see her healed but sometimes a mother’s love in all its splendour is just too stubborn- she won’t give up on me having the quality of life she wasn’t able to have! I have no pain at all while she takes tons of meds to lessen hers: bittersweet!
I’m happy to report that the last time I cried because of my AS was happy tears and only because I was able to run again! Walking without pain felt incredible but I had all but given up on being able to run again so when I did, the tears ran too! Since being on Humira I’ve been able to lose 10kg’s because I can exersise more, I can walk from campus to campus without being in pain, I can get out more because I’m not restricted and I haven’t taken a single pain killer in forever!
My next goals are to graduate again with an LLB in 2015 and to send my AS into remission. I’d love to be able to donate blood again-
Everything will be okay in the end! If it’s not okay, it’s not the end!

A.S. Face 1349: Loma Viljoen

A.S. Face 1349: Loma Viljoen

My name is Loma Viljoen,and I am from a small little town named Vredefort in South Africa. I am 45, married with two sons. I was diagnosed with AS and  HLA-B27 positive. Now it has spread to my left foot. As so many of the faces I have also gone from one doctor to another and the shame you feel to hear “we can’t find anything wrong”. It is very hard to accept that you have this “disease” I feel a shame to walk with a crutch. I can’t say I look normal because my back is forward and I have a big tummy (caused by IBS). My husband always say he can almost put his cup on my lower back. Thank you for your time. I wish all the faces well and may God make you strong through your journey.
God bless!


South Africa, Africa

A.S. Face 1337: Marc

A.S. Face 1337: Marc










My name is Marc from South Africa and I'm 35
Been diagnosed at the age of 25 been suffering from the age of 15. Doctors told me for years it's growing pains and then juvenile rheumatoid until I had the genetic test done in the US when I was 25 and diagnosed properly.
The disease has fused my lower spine and cervical vertebrae but not fused my life. It has made me stronger and appreciate what I have. It has also unleashed some potentials I never knew existed within me. I'm a successful entrepreneur and an avid fitness enthusiast.
"The disease can modify your body but your personality and spirit is your choice"
South Africa, Africa
 

A.S. Face 1307: Evelyn de Vos

A.S. Face 1307: Evelyn de Vos

 

 

 



Thanks for all the posts regarding to AS. I'm still a "new" kid on the block. Been suffering for 10 years with lots of pain and 4 back surgery's. Only been diagnosed with AS 6 months ago.

Never heard of AS before, and sometimes trying to explain to other people what I go trough every day seems to be more of a hassle than to live with AS.

I've got a loving husband and don't know what my life would have been with out his support and love for me!

My biggest wish is to be pain free so that I can have lots of play time with my grandchildren.  My second grandchild will arrive by the end of the year and Emma is turning 3.

I always feel like the odd one out, because of the pain.
Age. 42
Western Cape
South Africa

A.S. Face 1095: Lynn Reay

A.S. Face 1095: Lynn Reay

This is my sister her name is Lynn Reay. She is 35 and is a single mom of a 9 year old daughter and a 6 year old son. Both children were born prematurely at 6 months and have unique challenges growing up.   She was very sadly widowed at 33.  She also had AS and fibro. Every day shew faces the world smiling and goes to work as a grade school teacher.   Her energy and love for her children is truly inspiring.   Despite all the physical pain, she still has to deal with all the emotional pain too.  She is my hero and my rock.   I couldn’t do without her in my life.

Sincerely Gail

South Africa, Africa

 

A.S. Face 1089: Gail von Graevenitz

A.S. Face 1089: Gail von Graevenitz

My name is Gail and I am 38. I am the mother of 3 teenage girls, 16 18 and 19. I work full time as an air traffic control instructor.  I have AS and fibromyalgia
South Africa, Africa