Celebrating Phenomenal Women during August
It was a great shock to me when I was diagnosed with macular degeneration about 4 years ago at age 72. I was almost totally blind in my right eye with wet macular degeneration. My left eye had approximately 50% sight. I started with injections almost immediately. A bigger shock was when I wasn't allowed to drive anymore and could only read on an ipad which I still do today. However I managed with lifts from Uber and good friends.
I have always loved travelling and I decided that my low vision should not deter me. I was nervous in the beginning but took tours on my own e.g. China, Namibia, Europe and Scandinavian countries etc. Airport assistance is excellent nowadays. At times I found it very difficult coping in strange lifts and finding light switches and other plugs. Strange showers are a nightmare.
I also used by mistake a tube of mosquito repellant instead of toothpaste to brush my teeth. What was amazing was joining Belinda's Low Vision group and meeting special courageous people who were far worse off than myself and cope extremely well!
My biggest surprise was being allowed to drive this year after not having driven for over three years thanks to care and successful treatment by Dr Joanne Miller!
Hazel fitted me with driving glasses and it is wonderful having some degree of independence. Luckily I wasn't nervous to start driving again. I'm of course happy to help anyone with a similar condition.
Using Humour to Face Adversity
Today’s blog is quite a personal one for me. Many of my followers are aware that I live with a condition called Ushers Syndrome, an inherited genetic condition characterised by hearing loss and gradual vision loss. There’s no treatment for it, as I write, but I have faith that, one day soon, those of us losing our vision will be able to see again.
Back at the ranch though, everyday life goes on and I am forced to find ways of maintaining as much of my independence as possible. It’s no easy feat and there are days when I would love to hide under my duvet and not face the world. But I am of the mind that every day is a new little life to embrace, celebrate and enjoy so I have no choice but to simply push on.
My latest challenge has been accepting the “dreaded” white cane! Resistance is a funny thing – resist, resist, resist but whatever you are resisting keeps coming back until you learn to relax and release. For many of us, this acceptance may not even happen in this lifetime but it’s going to keep staring at you in your face until you do accept whatever you are resisting. I decided that I would rather accept in this lifetime, what I am resisting, than have to face it all over again in my next!
It’s always been easy hiding my hearing loss and that I wear hearing aids. I keep my hair long to cover my ears and learnt to laugh along when others laughed, cry along when others cried, keep quiet and looked knowledgeable, nodding my head even when I don’t know what the hell the conversation is all about.
Hiding the fact that I am visually impaired has not been quite so easy though. Stumbling through shopping malls, bumping into other shoppers, walking through closed glass doors (I don’t actually get through the doors but it takes a bit of banging my head before it dawns on me that I am going no-where fast!), walking straight pass people who know me, not seeing them, while they frantically wave and shout “Hello”! I have left many a person, standing perturbed, wondering why I was ignoring them. How rude! And, so then I am forced to own up and confess that I am going blind.
In comes the white cane. A stark symbolism of all that I am losing and all that I may continue to lose. A symbolism of a disability I would prefer to not acknowledge. There’s a wonderful organisation called the South African Guide Dogs Association for the Blind (https://guidedog.org.za). Let them know you cannot see and the help flows in. They send an orientation and mobility practitioner (I never knew such a job existed until I met one of these amazing people) round to visit you. They assess your vision loss and then produce the white cane, for free. They even give you something called a liquid filler – this nifty little device is placed on the edge of your mug and gives off a vibration with a loud noise telling you when your coffee is about to overflow. Pretty cool I must admit.
My initial reaction to the white cane was to shudder. Then, tentatively, taking hold of it (so as to not offend the lovely O & M lady who was being kind enough to give me her time and patience) I started to walk around my friend’s house, sweeping the ground as I walked. My first two times with the white cane were full of resistance and I almost pretended it wasn’t me walking around with this thing in my hand.
The “aha” moment came last Friday, when together with my Ushers friend, Sue and my O & M lady, Salome, we ventured out into our local park. Both Sue and I sat in the car, our canes folded up in our laps. I think it had dawned on both of us, finally, that this was for real and that we were about to face the world, having strangers watched us as we made our way around the park with our dreaded canes. It was at that moment that I realised that I had two choices – tell Salome I can’t do this or tell myself I CAN do this.
Stepping out of the car, assembling my cane (the white cane of the past has become quite trendy nowadays, made of light steel and collapsible when not being used. It even comes with a very smart velvet bag!) the first thing I was aware of was a security guard watching me, fascinated. As Sue and I started to bravely make our way across the car park, he gave me a huge grin and suddenly I did not feel frightened by the predicament I find myself in.
We entered the park, sweeping the ground, Salome encouraging us to look ahead and not at the ground. And, we laughed. We laughed for the whole two hours we spent walking around the park, finding the humour in our situation at last. We laughed as we chattered endlessly, thrilled in the realisation that we could actually walk and talk at the same time without causing major havoc to others and ourselves. It was like the white cane had become our mind, searching out for the holes, the bumps, the obstacles that would normally have us falling over ourselves. And, through all the humour, I realised that I was finally able to accept the adversity that I am being challenged with.
When all else fails, find the humour in the situation. When you find yourself resisting, let go and laugh. When you find yourself challenged to accept a situation, relax and laugh. Humour may not be applicable in all challenging circumstances, but in many cases, it is a useful “go-to” when all else fails. Humour and sharing your adversity with those that understand and care also helps. So, when facing adversity, take a deep breath, reach out so that you are not alone and bring in the humour
When all else fails, find the humour in the situation. When you find yourself resisting, let go and laugh. When you find yourself challenged to accept a situation, relax and laugh. Humour may not be applicable in all challenging circumstances, but in many cases, it is a useful “go-to” when all else fails. Humour and sharing your adversity with those that understand and care also helps. So, when facing adversity, take a deep breath, reach out so that you are not alone and bring in the
Celebrate another phenomenal woman with us during August
Jennifer Webster nee Mackenzie
I was diagnosed with Stargardts disease, a juvenile onset form of Macular Degeneration, when I was 10.
I completed mainstream schooling and pushed myself to be good at everything, so that I could prove to myself that I was ‘normal’ (whatever that is) I was legally blind by matric, but tried my best to never let on, even became head girl of a big school, a terrifying experience, and had provincial colours in 3 sports. I completed a BA Honours in Human Movement Studies at Rhodes University. I initially struggled to find work and did a few odd jobs until being a mommy became my full time occupation.
When our youngest was 8 she started playing hockey. I volunteered to coach the drills and skills. I could not umpire as I needed my binoculars just to see the other side of the quarter field. The headmaster saw my enthusiasm and asked me to apply for the Phys ed post. Long story short, I taught from Gr00 to Gr 9’s and, after a 5 month diversion where my husband and I were missionaries to China, taught Gr 8 to 12 Geography till 2004. I took a year off to train a dog for myself, cos I was too sighted for a guide dog and too blind to be safe running by myself.
For 5 years i was involved in a young adult’s leadership programme. Then I got breast cancer. It was a turning point for me, our marriage and family.
I stopped running from my eyesight struggles, the stress I put on myself to ‘conquer the world’, or to be normal in a sighted world. At a very low moment, when I thought I was gong to die, I started to write. After getting counseling at the Helen Keller Low vision services, I started to face the B word...blind.
With help from a friend I set up a blog site as a tool to journey into emotional integration - https://goingblindwithinsight.wordpress.com/ .The journey is still in progress as ongoing loss and new stages of development in our lives, require adjustments in our marriage and family.
I am so grateful to my husband for sticking up for me, sticking up with me and sticking to me. His gentle strength and wisdom has been so stabilising for me.
Whilst some of the stories are funny and others very raw, they have been helpful to others. I represented Low vision on the Teacher Empowerment for Disability Inclusion project with UCT and the EU to help teachers get an insight into the head of low vision learners. The Future Learn MOOC will be launched at the end of Sept.
I also have a passionate discontent for the cost of assistive technology for the visually impaired. So to this end, I have created, patented and trademarked a product called a Pad Perch. I would be lost without it as it allows me to participate in conferences and seminars. I am awaiting investment opportunities to bring it to market, so that anyone with a smart device can access, and produce text in all formats. I am currently a part time pastor and also busy with a start up enterprise. I have very little idea what I am doing, but it is a fun journey and I am meeting amazing people on the way.
My favourtie life mantra from the scriptures is where God says to man, “My strength will be made perfect in your weakness”.
Celebrating another Phenomenal Woman during August - thank you Nina Mc Elroy for sharing your inspirational story with us
NINA MC ELROY
Mother’s day 2013 is a day I will never forget. It is a day I normally would have spent with my then husband, Gavin and my 2 sons, Luke and Liam, who were 5 and 12 years old respectively at the time. Instead I spent the day in bed as I had an eye infection and mild flu-like symptoms. I had been prescribed medication for mild depression a few days before. I did not link my symptoms to the medication at all as I had only been warned by my pharmacist and GP to watch out for a rash as a possible side effect of this medication. After taking the second 50mg tablet that Sunday evening, I woke up the Monday morning feeling incredibly weak and I had a rash on my face and chest and my eyes were bloodshot and red. I realized that something was not right.
I went to the GP and she immediately referred me to a physician at Milpark who immediately admitted me, initially into a general ward. However ,my symptoms got progressively worse in that first week. I was so heavily sedated with anti-biotics and painkillers. I lost my vision and my voice in the first few days. My skin started peeling off and welts and boils had formed on my skin which began erupting like little volcanoes. My epithelium had started burning off internally in my mouth and then through to my internal organs. It had also burnt off the epithelium on my eye and eyelids and did a tremendous amount of damage to the cornea. My eyelids had also fused to the eyeballs. This was all as a result of an allergic reaction to the medication I had been prescribed. I went from being a professional architect, mother and wife, to a victim of Stevens- Johnson’s syndrome.
It was determined by a plastic surgeon and Dermatologist that what had started as Steven’s Jonson syndrome had now developed into the more severe form known as Toxic epidermal necrolysis syndrome (TENS). More than 50 % of my body and organs had been affected.
After having my old skin abraded off I was fitted with a synthetic skin called bio brain(which comes in the form of sheets and has healing properties within) on my skin and was transferred into the ICU burns unit at Milpark. I was now considered a burns patient.
The first 2 weeks were critical because the risk of septicemia was so high. The bio brain had started healing the new skin and within the period of 2 weeks it started bubbling and peeling on the sides which was a sign that the new skin was healing and that the bio brain was ready to be peeled off.
At the time, the eye specialist had to start intervening by removing ulcers in theatre that had started forming on my eyes. After 6 weeks of an intensive regime of treatments in hospital I was finally discharged. The greatest damage had been done to my eyes. I went back every week to have ulcers removed. I was then finally referred to a cornea specialist. Not only were the eyelids fused to the eyeballs, but my tear ducts had also fused closed. My eyes were covered in scar tissue. I received countless procedures and transplants on my left eye. None were successful due to lack of moisture.
For my right eye my brother donated his epithelial stem cells. Sadly, this too was unsuccessful due to the lack of moisture. I was now labelled as disabled and visually impaired.
This was all emotionally, physically and mentally draining. But despite all this I was determined to regain some sort of normality and get control of my new life again. First on the list was going back to the gym. I began training with a bio kineticist to strengthen my body in 2014. I was incredibly weak and had lost a tremendous amount of weight due to the difficulty in eating as the result of essentially a raw, dry mouth where my saliva glands had also fused closed. My epithelial cells on my lung had also burnt away and my lungs needed to be strengthened as well. In 2017 I started water aerobics at the gym with a group of ladies. This helped to strengthen me further. Throughout my time at the gym I have formed an incredible support base and inspired many gym goers with my resilience and determination. My own hard work at gym has been paying off and since I have been stronger I have gone back to my pottery classes and began with ballroom dance classes, as well as self-defence classes.
In 2016 as a result of all the constant setbacks from my eye procedures, I decided that cane training would be the next important step to regaining my independence. I did this training through the S.A mobility association for the blind. I was trained at my gym, Cresta shopping centre and my younger son’s school. I had also begun using Uber at this point as my husband and I had decided to separate and I had moved into my own place with my assistant. I am now proud to say that I confidently use Uber on my own.
In pottery, I am working towards an exhibition of my work completed throughout my journey. Having engaged in pottery as a fully sighted person for 14 years, it has been a completely different experience working on a more tactile level. It has also been humbling to hand over my completed work to an assistant for finishing touches such as glazing etc. which I would normally have done myself.
In dancing, I trained towards a dance showcase in April 2019. I danced a mambo and disco styled ballroom dance to the Abba song, Dancing Queen. I danced against 11 sighted competitors in the over 35 bronze category. I came 2nd overall in this category. My 5 months of training had paid off and I am now even more motivated to continue dancing in future competitions.
In 2017 I had started self-defense classes using my cane as a weapon in the event of any attack. I realized that during this journey of being visually impaired, I have become incredibly fearful of being attacked as I have no control of my surroundings. My trainer also trained me in my own home using kitchen utensils as potential weapons!
On the home front, I am mobile and independent in my house. I am able to cook, with slight challenges. Because of my architectural background I am even able to visualise the spaces in my home and decorate accordingly. My garden is my current project.
All in all it has been a journey unlike any I have experienced before. I have done and accomplished more things than I ever thought possible. I am a survivor of Steven’s Johnson syndrome, a condition with a mortality rate of 80% . I am determined to not be a victim but to live every day to the fullest!
Join us during August to celebrate Phenomenal Women - Isabella Holden shared her inspirational story with us....
I was diagnosed with a retinal condition at age 13 affecting my entire retina leaving me with minimal vision. Being 56 now means I have been partially blind for 43 years. For me it is important to acknowledge my profound losses that come with this severe disability, while at the same time integrating my specific form of blindness into my life. I take it as my norm and work with it and around it. For me living is like water. Water can hit a wall, but water has a way of getting through, whether it is over the barrier, eroding the foundations over time or just finding the crack. There is always a way. Problem-solving is a big part of how I live. From how to do my hair, how to know what I get dressed in in the morning, how to physically negotiate my world, how to engage with people socially – basically how to live a normal life and accessing the world around me. Doing ordinary things from day to day more often than not require ‘finding a method and making a plan. My disability requires of me to be inventive and fairly fearless if I want to do the things I want to do. And indeed, I can get into trouble. I have almost fallen off the Drakensberg, a mountain which I should not have been climbing in the first place. I fell into a manhole walking an unfamiliar street in Yeoville. I have gotten terribly lost in foreign cities while travelling on my own simply to see if I can do it. Just the other day I jumped into a car with a bewildered driver who wasn’t after all my Uber. Yes indeed, I get into all sorts of scrapes, but I have this belief that I will always get out of trouble again. I tell myself that I am very good at falling, but I am even better at getting up. This has given my life a tinge of adventure and excitement just by attempting to do ordinary things.
I do safe, sensible things as well. I am the director of an NGO involving 28 staff and on average 250 volunteers year on year. I have to give leadership as well as apply my mind to finances, management, project management and fund-raising on a day to day basis. My work is richly textured with many tasks and responsibilities, many ups and downs. The one thing it certainly is, is always interesting and demanding and I feel fortunate to have this constant opportunity for growth and learning. I have taken up Spanish dancing, for which I have done 2 exams so far. Another not-so-sensible, but still safe activity I indulge in is creating paintings in bright colours on large canvasses. Because I am not guided by sight in this traditionally visual activity, I can enjoy myself without inhibition – a freeing experience.
The crux of my quality of life is people. Where ever I go, there are angels who can get me back on the right path if I am lost or tell me what colour a dress is in a shop or dish up food for me at a buffet. Random strangers are truly kind and I share lovely, warm moments of connection with helpful people I am forced to engage with due to my disability. My biggest rock is my husband of thirty years who understands that I like to push my own boundaries and who supports my sometimes crazy and dangerous activities with the same faith I have that I will get through.
Ultimately, I have a strong philosophy that I am the creator of my own life, no matter what difficulties come my way. Hand in hand with this idea, is that I believe it is crucial to live my life not fixated on my losses. It is incumbent on me to have clear 20/20 vision when I look at the good things I have and to recognize what I have the power to create for myself. It is taking responsibility and having deep gratitude and enjoyment of the smallest of things that shape my approach to life and blindness.
Cindy Jacobsz shares her amazing story with us.....join us in celebrating phenomenal women during Women's Month....
I was diagnosed with Macular Degeneration Stargardts when I was 15 years old. I went to Prinshof school for the Partially sighted for 2 and a half years, where I matriculated. It was difficult to find a job, persons with disabilities weren’t seen as somebody who could really add value to an organization, that was how I felt and was treated. I did not want to work on a switchboard I wanted to do something that could make a difference in somebody’s life.
I studied a BA and BA Honours Psychology at University of Pretoria. It was difficult as It had a lot of reading but was very interesting. I worked as a career counsellor for a few years this was a very fulfilling job.
In 2008 I started cycling tandem just for fun, I started participating in the monthly WC para league races. I qualified to participate in SA paracycling Champs in 2009 & 2010 I won a gold medal in 2011 I came 2nd I was ready in 2012 to take back my title but was in a very serious cycle accident during the Argus in march 2012. I fractured my pelvis in 2 places tore some ligaments in my left shoulder and many more cuts and bruises to my face and legs . I was booked off for 3 months from work for my injuries to heal.
I never thought I will participate in sport again. In 2013 I started running and swimming. In April 2013 I participated in the Western Cape para duathlon and qualify for SA para duathlon Champs . it is very difficult to get a guide, the lady that was my guide at the WC para duathlon event cycled tandem that day for the firs time. She was willing and got the feeling of the long borrowed bike very quick. I did not have a tandem anymore since the accident in 2012.
SA champs and Africa champs was held in Potchefstroom and she could not go with me. I asked a friend in Pretoria if she wanted to be my guide. We took on the race and won gold again. In Aug 2013 I represented SA at the World Champs para duathlon event in Ottawa, Canada. Where we won gold. I got injured due to, too much and to fast training in running and had to lay off running for a long time for the injury to heal.
In May 2016 I donated a kidney in December 2016 I had to get an operation due to a surgical hernia. That put me back a bit.
In August 2017 I participated in the Transbaviaans a 230km off road event. I had a great pilot and we won the tandem category. This was my first mountain bike event. It was amazing to fly over the corrugated dirt road with all the solo bikes following us. The climb on the mountain pass was not so fast at one place the road was so steep for the tandem we just spinned, and had to get off. Cycling in the middle of the night in pitch darkness going down a mountain pass was a experience difficult to explain. I put my trust in God and my pilot, trusting his judgement. When we finished the race and heard we won the tandem category both of us had tears in our eyes. I don’t know if that was of relief or joy, maybe both. It was a long race exhausting us to the bone. Absolutely amazing. Event and well organized.
Later that year we cycled 400km in 24hours doing laps to raise funds for a charity this was another great challenge for us, we wanted to do the full 500km but the mountain bike route was not suitable for the MTB tandem, although we raised the funds we wanted to for the charity. Making a difference in a child ‘s life.
In September 2017 I took on para triathlon. In Feb 2018 I did the ITu Discovery sprint triathlon and won 1st place and at SA para triathlon I could not go to Africa Champs due to a lack of funding. In 2019 I won gold at SA champs and Africa champs in Mauritius with my daughter as my guide. We also won gold at the SA para duathlon champs in June 2019. This was an honour to participate with my daughter as my guide.
In August 2018 I did the most amazing expedition. I did the M2K with ABBF in India it was an inclusive MTB cycle expedition to cycle the highest drivable mountain pass in the world. We were the only South Africans and the first lady tandem team to cycle this road. We cycled up to Kardung La at a Hight of 18 5000ft. it took us 9 days to cross over 5 mountain passes starting at a Hight of 6 000ft. now for a Capetonian living at sea level it was quite a challenge not to get Altitude mountain sickness.
We were an expedition party of 5 blind tandems of which we were the only lady team, 2 amputees and 5 abled cyclist.
After the Himalayas, in September 2018 I was going to cycle the K2C a MTB event from uniondale to Knysna. This was another big challenge my pilot’s dad got a stroke the day before we had to leave, and she could not go with me. I asked another friend if he could race it with me. It was his first MTB tandem race. Again he was an amazing pilot. We had some mechanical problems with the bike but still finished the race safely.
In December 2018 my guide asked me a few days before the Woolies MTB triathlon if I wanted to do it with her. I agreed, we had to get special permission as this race has never been done by a visually impaired athlete. We had to promise that we will not RACE and take it easy. Which we did. It was so special to do the tricky event with her. I am very great full to her giving me the opportunity to proof that we can also do the event safely.
In February 2018 on a cold Sunday morning my guide and I took on the Torpedo Swim-run event I was not sure that we were going to win this race (para) because I was still suffering from the back injury. We had to run 8 km and swim 2km in total alternate the run and swim. It was great fun swimming in your running shoes and running with your swim cap. We use a swim tether and we got tangled in it tying it to our legs with every swim changing it with the run tether. Then we just used the swim tether to run with too. It was a very fun event and we just won it with the last swim I really battled with the running.
Unfortunately my road racing tandem was seriously damaged on the flight back to South Africa after Africa Champs in Mauritius, I was not paid out enough to replace my tandem and will have to save up to replace it. So no more road cycling for me for a while.
Through my participation in cycling and para triathlon I have achieved many of my personal goals and encouraged many other people to take on challenges. Don’t let your disability disable you to enjoy life and to do something for yourself, you owe it to yourself. Go out there and embrace life. We are girls we can do it.
Celebrating Phenomenal Women during August
Thank you Sue Scharf for sharing your inspirational story with us....
“Life is and adventure or nothing at all” – this quote from Helen Keller has become my motto over the last few years: sustaining and motivating me through some pretty challenging experiences, caused primarily by my double-disabilities of severe hearing loss, and retinitis pigmentosa: combined in a syndrome called Ushers Syndrome.
In short, I am 55 years old, was diagnosed with bilateral hearing loss at age 4, yet had been hard of hearing possibly since birth or shortly after – as my common complaint to my parents was that I couldn’t “see” them due to the fact that I was lip-reading and if they didn’t face me I couldn’t lip-read (i.e. see) to hear. I have worn hearing aids ever since, went through main-stream schooling, and obtained a BSc degree in Dietetics. My first 7 years of work were spent in State hospitals (Baragwanath and Pretoria Academic) working as a clinical dietician and trainer of Intern dieticians. In 1993 I started up my own dietetic private practice in Randburg, and over the years 2002-2008 I opened up 3 more practices in the NHC health centres in Randburg, working and also employing Dieticians in all of them. In 2005 I started my business Dieticians At Work which offers dietetic services of all sorts (private practices, corporate dietetic/wellness services, advanced nutrition and business training of dieticians across SA, lay public workshops, product development, menu planning and much more: www.dieticiansatwork.co.za).
In 2016 I took on a full-time job as Dietician and Sales Manager for Back To Basics-Nutrition, a food manufacturing company based in Roodepoort, that manufactures nutrition supplements (a balanced meal replacement shake and a low calorie energy drink, both of which are “Low GI” = slow-release energy sustaining drinks) for shift workers in mines and industry, and now also in retail for the sports market and anyone battling with low energy levels due to busy lifestyles and inappropriate diet. This career change has been exciting, fulfilling, challenging – and despite being extremely busy, thoroughly enjoyable! Dieticians At Work is more active than ever, with my very capable Manager and Team running the show.
I married and had 2 kids (a son and a daughter) in the 1990s. Sadly, due to many reasons, my marriage ended 3 years ago. My 2 kids, now in their mid-twenties are just amazing: slowly growing in their own chosen careers, and the BEST support I could have asked for. We are blessed to have such a close and supportive relationship.
In my 30s I started becoming night blind, and in 2008 noticed a general loss of peripheral vision – which resulted in the diagnosis of RP. For 9 years the condition stabilised, and I was still able to drive by day. A severe deterioration occurred between 2017-2018 (I subsequently learned that these “dips” are the nature of RP), and lost my driver’s licence in 2018. My MD at Back To Basics, without hesitation, agreed to employing a driver for me. Noma and I, having spent many many hours in the car together, have forged a special friendship and bond.
This severe RP dip, caused me to really face my life head-on, and look at options to manage and live with this condition. The double-whammy of losing my sight which I had relied on my entire life in order to “see to hear” by lip-reading caused huge panic initially. Slowly but surely, I have started to take control of this situation. Firstly,through Retina SA, I raised funds to have my genetics tested, with the initial idea of being able to go onto clinical trials for a possible cure for RP. My amazing extended family across SA and the globe contributed generously towards this fund-raising, as did so many friends, associates and colleagues. I was touched and moved beyond words at the enthusiasm shown by everyone towards this effort. The amount required was raised way in excess of expectations, and my genetics were tested in Estonia, along with those of my new-found “Usher’s” friend Jana’s. The results came back with a positive diagnosis of Ushers Type 2, which will have benefits in that family members both now and in future generations to come with symptoms can now test for the exact gene (now that we know which one to test for) at UCT; and in addition, I may (in years to come) be able to go onto a trial, once they have passed the safety phase, and with the approval of my Opthalmologist (whom I totally trust) whereby a potential partial cure for RP/Ushers may be the outcome. The genetic testing will most certainly benefit those in future generations of my family and others with the same condition. In the meantime I have accepted that I will learn to live and adapt to having low vision.
Highlights in my life during the slow onset of Ushers, have included first and foremost the wonderful incredible support of friends and family. In addition over the past year I have met wonderful people who have without doubt enriched my life: especially those at Low Vision, Salome our Orientation & Mobility Coach, Noelene the Genetic Counselor, and my wonderful friend Jana who also has Ushers (having a friend in the same “disablity-boat” has made all the difference to both of our approaches to the challenges and experiences we face: we get together regularly for cane training – so hilarious!, coffee dates, dinners – times to share, laugh and even cry).
Other highlights include my climb up Kilimanjaro in 2011 with a group of 5 friends: a challenging and yet life-changing experience for me, especially as the summit climb is done at night. An inspiring, patient and incredible Guide, Tom, guided me step by step up that mighty peak in Africa. Tom and the other guides were the true heroes of this climb! This achievemnet influenced my approach to life in so many ways: knowing that anything is possible if you put your mind to it!
Today I am in a positive space, embracing life’s opportunities, enjoying new challenges, strong in my faith, loving my job, appreciating and enjoying my friendships, and looking forward to creating greater awareness (somehow!) together with Bea, Hazel and the others at Low Vision and my fellow VIP community.
Celebrating Phenomenal Women
By Claudette Medefindt
I was diagnosed with Retinitis Pigmentosa [RP] at five years old by the wise old Aunts in our family who kept a lookout for children who had obvious signs of night blindness. The name of the condition was not known but the heritability and progress of vision loss was patently obvious in a large and multi-generational family. It was indeed dominantly inherited RP with early onset night blindness and very slow light to dark adaptation times accompanied by poor contrast vision.
Growing up in this warm, embracing family, there was always a kind hand to hold in the dark and looking back RP did not influence my life to a large extent. It was only in the hectic rock ‘n roll teenage years and the start of visual field loss that the social impact of vision loss started to become an intrusive reality. The benign detachment of post war parents, struggling with the economic reality of the times, coupled with an underemployed, severely visually impaired father, encouraged an attitude of coping and independence in the two out of four sibling’s affected.
My younger brother and I were both blessed with a good intellect and remarkable memories and these served us extremely well in our education and careers. Socialising, sports, dancing, amateur dramatics were all attempted with enthusiasm and some success. RP was just another imposition that you dealt with on a daily basis. Fortunately the dominant form of RP has a slow rate of progression and this attitude of virtual denial was easy to maintain, but only until I had to face the cruel reality of my children both inheriting my faulty gene.
Suddenly my world changed dramatically. No longer the carefree housewife, enjoying a life of PTA’s and coffee mornings. I had to do something. Luckily the [then] RP Association was founded and my brother and I soon started a Gauteng and then National body. His business acumen coupled with my attention to detail and our mutual inherent ability to communicate well with people set us on a path of patient advocacy and action.
Retina South Africa has become a model of what motivated patients can do and I am proud to say that I am approaching my 40th year of full time volunteering to fight genetic retinal blindness. What have we achieved?. We have many loyal and dedicated supporters and patient activists and collectively we have made a huge impact.
We have a successful and long standing partnership with the Division of Human Genetics at the University of Cape Town, where our genetic testing is done; we have the respect and co-operation of Ophthalmologists, Optometrists, funders and Government.
We have a solid funding base that allows us to offer substantial assistance to patients in the fields of counselling, education intervention and genetic diagnosis. We have established a patient registry that is the envy of many international retina groups. This has allowed us to participate in the upcoming first ever clinical trial for inherited retinal conditions in South Africa.
Did Claudette get lost in the process, certainly not. Beside my duties as head of Science for Retina South Africa, my counselling sessions with newly diagnosed patients, my role as Deputy President of Retina International I also have a wonderful life.
I cope with advanced visual field loss but thankfully have good, although limited central vision. I am a qualified yoga instructor with my own home studio, an enthusiastic if not accomplished water colourist, a science writer, a happy wife, doting grandmother and grateful friend. Do I wish my life had been different, perhaps not for me. I have travelled extensively, met a king, a president and the most amazing patients and researchers around the world. I have walked on fire, swam with blind, pink dolphins in the Amazon, seen the wonders of Egypt and been awed by the humility of the Tibetan refugee monks in Dharamsala. I have been honoured with awards but my greatest achievement has been touching the lives of hundreds of patients.
I have dedicated my life to try and change the one thing that has eluded me - to find a treatment to stop the inevitable darkness that looms ahead for my two precious sons.
But the journey is not over yet!!!
Celebrating Phenomenal Women during August - another inspiring story by Sally Kipps - Thank You Sally
RETINA SOUTH AFRICA WOMEN’S MONTH
I, Sally Kipps, am a 41-year old Physiotherapist from Cape Town and I am living with Stargardt’s Disease. I obtained my Bachelor’s Degree in 2000 at Coventry University in the United Kingdom (which offered exceptional facilities for students with special needs), and I obtained my Clinical Doctorate in Physical Therapy in 2017 from the University of Montana in the United States. I practiced Physiotherapy in Oxford (UK) for a three-year Internship, in Sydney (Australia) for ten years as a Senior Neurology Physiotherapist, and in Hawaii (USA) for one year at a Rehabilitation Centre. I returned home to Cape Town in 2017 after 22 years of work, study and travel abroad and I am now working as a Sole Practitioner in Integrative Body Work - Mindful Movement, Therapeutic Yoga and Myofascial Release.
My condition was diagnosed when I was six years of age. Since that time my eyesight has deteriorated slowly and I am now registered legally blind. I have no sight remaining in my macular (central vision) but my peripheral vision remains functional. I have maintained my independence beyond medical expectation by learning how to use focal points in my periphery and by careful scanning techniques. I still run in familiar territory, hike, swim, do yoga and travel, and apart from the odd unexpected obstacle and downward steps I mobilize independently without an aid. I manage most administrative tasks with text to voice software on my phone and laptop, CCTVs, handheld magnifiers and an Orcam. I have been very lucky that my deterioration and loss of function has been well timed with new technology that has allowed me access to almost everything I need.
Whilst it is healthy for newly diagnosed children and young adults to be ambitious and to explore their full potential, I believe that it is much more important for people who are losing their vision to be very kind and gentle with themselves and to honour the extremely challenging internal journey that a diagnosis like this sets in motion for one’s lifetime. I would love to see young adults exploring the concepts of acceptance (easier said than done) and feeling enough exactly as they are, instead of choosing a life of pushing, striving and fighting to prove their equivalency and their worth. I am honored to be an example of what can be achieved with a vision impairment despite the limitations others may assume of us and the daily frustration of accessibility constraints we experience. But for me those who are truly successful are those who are brave enough to feel it all, to maintain gratitude and grace, to love and accept themselves, and to know deeply that just being the essence of who they are is enough. You don’t need to have sight to love and connect with others and to be a presence that others want to be around.
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