In case you didn’t know, I have a rare disease called Myasthenia gravis and I also work for RDSA as my full-time job. However, I have other rare talents that you may not know about – my husband and I have mad dance skills (mad being the operative word); I am double-jointed and flat-footed; and I can give a mean massage. I can also dislocate my jaw and hip on command.
After all the negativity associated with the past year, RDSA has decided to flip the switch on their awareness campaign and get everyday South Africans to #ShareYourRare whilst encouraging others to do the same.
Can you spin on your head, or do the worm, or even do chubby bunny with 20 marshmallows? Is singing opera your hidden talent, or can you bounce a coin into a glass every time? This is YOUR rare, and this deserves to be celebrated.
Being RARE, by definition, infers being unique, highly valuable and possessing admirable or exemplary qualities.
A rare blue diamond 💎… Worth millions. A rare species 🦄… Highly sought after. A rare discovery 🍾… Highly newsworthy.
Except for Rare Diseases which are considered a financial burden, are overlooked by society and forgotten by the media.
The truth is that we are all RARE to some degree. We all have unique qualities, talents, features and abilities that make us different, and yet similar for that exact reason. This is something that deserves to be celebrated!
So how can you get involved?
This is super easy…
Share your rare on your social media platforms and tag Rare Diseases South Africa; challenge your friends or followers to do the same; and check out www.rareaware.africa for more details. You can also follow the Instagram page which has been set up especially for this campaign here.
Please also change your profile picture on your social media platforms to the “R” above, and include the caption “Join the tribe… Visit www.rareaware.africa#ShareYourRare“
With your support we can build a movement of Rare stories and get South Africa to share amazing positive stories building up to International Rare Disease Day on the 28th February 2021.
Founded in 2013 by Kelly du Plessis, Rare Diseases South Africa is a nonprofit organisation that has been successfully working to ensure that people living with a rare diseases and congenital disorders experience better recognition and support, improved health service and a better life overall.
Rare Diseases SA has 100% B-BBEE Social Development Recognition and is Section 18A certified with SARS making your donation tax deductible.
You can make a donation in many ways by visiting here.
Please help to create #RarenessAwareness and #ShareYourRare across social media. Let’s remind people about just how beautiful being rare is. Lets change our feeds to be filled with positivity and laughter through this difficult period. Let’s spread kindness and good by allowing our rareness to shine!
Some rare disease facts:
In South Africa rare diseases are defined as a dsease affecting less than I in 2000 people in the population
As a combined grouping, rare diseases affect 7% of the population, which is:
1 in every 15 people
4.1 million South Africans
70-80% of rare diseases are genetic. Some may be inherited in families while others only affect the individual
Other rare diseases may be acquired during life due to trauma, environmental effects etc.
For many rare diseases the cause is still unknown.
Candice is a friend of mine that I met through Rare Diseases South Africa. She is such a brave woman, and is someone who is always looking for ways to make others happy. She reached out to me before lockdown about her idea for “Better Box”, and asked if she could include some of our Rare Bears in it. We discussed what she was planning to do, and I knew that this was really something special! Each box is put together with so much love and thought, and she is spreading kindness with every one sent out. Keep reading to learn more about this project, and see just how special it really is.
Some fun facts about you: I am a fun loving mom of 2 with a passion for anything creative and quirky. I have always been community driven working with Girl Guides Association SA, headed up CI for workplaces and was Miss Cansa 2000. I fundamentally believe in the value Kindness is Contagious and this is the mark I want to leave on the universe.
Tell me a little more about this business: Better Box was dreamt up in my hospital bed. Many times I lay in hospital having a real pity party for myself – the pinnacle being my 30th Birthday! I knew that people cared and were concerned for me but when you are chronically ill people assume that after a while you just ‘got this’. Actually though you don’t, because every time you end up back in hospital its a knock to your emotional and physical state. I just want Better Box to be the little glimmer of hope for people when they are at their low, this can be in any way , shape or form. Its a little Box of Happiness to let someone know that someone cares.
What inspired you to start it: I inspired myself to start. I am currently on medical disability due to my Rare Diseases and can no longer work in a traditional workplace. Most of the work for Better Box is co ordinated by me but my family are hugely involved due to my health. I lost my dad to Marfan’s Syndrome when I was 14 and my mom to Leukemia a few years back. While my mom went through chemo I stopped working to care for her and was at the hospital every day taking food and clothes to the others in the ward with her. I 100% know that is where my passion for this really started, I just had no idea the way my life and health would take me to Better Box.
Who are some of the brands that have come on board: The suppliers for Better Box have been carefully selected as I wanted to empower small businesses run by mommies, Rare Diseases patients as well as give back to a community in some way. I would not have Better box without the Rare Bear Project and they are an integral part of my boxes. Other brands include KwirkNation, Creative Junction, Mammamade, Knits and Knots, Wylie B Vinyl crafts, Gift Boss, Oh Soap Crazy, and Hope Soaps.
Why do you think this is such a great idea: So much love and care goes into preparing each box, the goodies inside are practical, fun and quirky. I dare you not to Smile!
Who do you think would enjoy one: Everyone loves to feel good and spoilt!
How did you decide on each item in the box: Our Signature Box the ‘Go Box’, is designed to include everything you would need for an emergency hospital stay – believe me I have forgotten more than one of these items even when I have prepared!
Whats in the box? Everything you would need for a hospital visit !
Custom made drip friendly Better Box sleep shirt
Warm comfy socks
Bamboozles toothbrush and toothpaste
Mini soaps and sponge
Earphones to tune out and chill
A little something to snack on
Colouring in to keep the mind busy and relaxed
Other boxes: Snack Box, Bump Box for new mommies, Brave Box for little ones, Be happy Box, FU Cancer Box, Donate a Box and the Box Fund We are also running a Pay it Forward campaign: We challenge you to buy a box for someone you know or we donate to ,and nominate a friend to do the same, every 10th box will be up for grabs for the people that purchased to gift or keep for themselves! Pay it forward, kindness is contagious!! Lets get a Better Box chain going! Show off your nominations and acts of kindness and don’t forget to tag us! #payitforward #kindness #cancer
What has it been like living with a rare disease: The last 12 years have been exhausting and painful. I have had countless surgeries, 36 kidney stones, gone blind in my left eye and now chronic fatigue, pain and hands that do not co operate. I am however grateful that I finally have a diagnosis as well as the ability to speak up for those with rare Disease!
Quote you live by: It costs nothing to be kind.
I absolutely adore everything that Candice and Better Box stand for, and have loved seeing her dream come alive. She has even sent a box to a friend of mine who is currently battling cancer, and it made my friend feel so special as well as reminding her just how much she means to so many of us.
If you would like to get involved in this, or perhaps even purchase one for a friend, please reach out to Candice via social media or email. Speaking from experience, I can vouch for just how much it means to receive a gift while in hospital or feeling rotten – because no matter how “normal” it is to be admitted, it honestly never gets easier.
***WARNING – this post may be triggering to some***
I never thought this would be my life.
I never thought words like infertile, barren, sterile, IVF or failure would form part of my vocabulary when describing myself.
I have been wanting to write this blog for the longest time, but have never had the courage to put into words the journey that we have been on. And then another Mother’s Day passes us by, and I lie crumpled on the floor as I hide away from social media and all the messages. I try to put a smile on my face as yet another person asks if we have kids, and try not to fall into despair as yet another Facebook invite comes through for a baby shop. I slowly inch my toe out to test the waters with regard to opening up about infertility, and the flood of messages from other women who are going through similar grievances causes my phone to “ping” for hours.
“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?”
― Laura Bush, Spoken from the Heart
In 2004 I was diagnosed with a rare disease called Myasthenia Gravis. This disrupts the message between my nerves and muscles, causing extreme weakness and exhaustion. I have been on chronic medication since day one of my diagnosis, and the side effects of these years of medication caused havoc with my fertility.
I married my wonderful husband in October 2012. From the moment we met, we both said just how much we wanted children. We are both very family orientated & knew we wanted mini-me‘s as soon as we were married.
I went off the pill as soon as we said “I do”, & we gave ourselves 6 months to try. Nothing happened, but we weren’t too concerned as we weren’t tracking my ovulation or anything – we were just enjoying being married & doing the baby-dance.
After a year of still no sign of falling pregnant, we decided to visit my gynae. She did scans & a few tests but still wasn’t overly concerned as we were both relatively young & still had time on our side. She did do some blood tests that showed I had very few eggs left, that are of a very poor quality. This was probably due to the fact that I was on chemotherapy -like tablets for 8 years for my disease, but we can’t be sure. It could also be from my septicemia I developed after a botched up operation in 2011.
***Note: fertility treatments are not covered by medical aid***
Before deciding to visit a fertility specialist, I decided to try the natural route. Once a week I would go for acupuncture & got given Chinese & homeopathic medicine to take on a daily basis. This made me feel a lot better & regulated my periods, but still didn’t help me fall pregnant.
We went back to my gynae for another full check-up. I had bad ovarian cysts (I have had about 8 operations now to remove cysts – one of which was 10cm big), as well as endometriosis which had taken over. My blood tests showed further deterioration of my eggs & she advised our best option was to go to a fertility specialist & see if we need to try IUI or go straight for IVF. I had to have an operation to remove endometriosis & ovarian cysts, & while she was in there she discovered my right ovary & tube were completely destroyed & these had to be removed as well.
We decided to be open with the journey that we were on, as it was always so difficult when people asked us when we were going to have kids, or why we didn’t have kids yet. It certainly helped to have everyone’s support throughout everything, & it also stopped all the unnecessary questions at braai’s or family gatherings. However, I also understand why people choose to keep this part of their lives quiet as it can be so difficult to openly discuss your latest hoo-hah appointment, or when your next period will start – and even more difficult to let everyone know when it didn’t work.
When we went to see the fertility specialist, he told us pretty much exactly what my gynae had said. Our only option was IVF & we didn’t have time to play around. The quality & quantity of my eggs was very concerning to him, as well as the rate at which I seemed to get ovarian cysts & endometriosis. He said if we waited for a couple of years I may not be able to have children, unless we got a donor egg (and maybe even a surrogate). I immediately went off a certain medication for my chronic illness that would make me a lot stronger, but causes major birth defects. He advised IVF would cost upwards of R65,000 due to the high doses of hormones I would need to be on, & they may need to do ICSI (where they inject the sperm directly into the egg) as well which would be an additional cost – even though there is nothing wrong with my husband’s sperm! (Note here: they were called Olympic Swimmers! In the infertility world, this is a HUGE win.)
We weren’t overly impressed with the bedside manner of this fertility specialist, & although I was getting sick of all the different people having to scan & test me, we decided to take one more chance with a new specialist. A family member had told us about Universitas Hospital in Bloemfontein where they had managed to fall pregnant & we decided to make the 12-hour round trip to Bloem to see if they had any further answers for us.
What a worthwhile journey! The doctors & nurses welcomed us with open arms, listened to us carefully & answered all our questions honestly. They held a conference amongst the doctors at the hospital to discuss our options with my Myasthenia Gravis & infertility issues, & then called us back in to discuss everything with us.
IVF was our only option due to time constraints & my health. We were very blessed as friends & family really rallied around us & helped with donations & fund-raising to help us reach our target to have IVF done; & we began the whole process in October 2015 (after having a HyCoSy to see if my remaining tube was open, or if another operation was needed – this was possibly the worst pain I had experienced up until this time, and Warren actually fainted seeing me in that much pain).
What followed was weeks of daily injections (up to 4 a day), tablet swallowing, more trips to Bloem, scans & emotional stress. Eventually we got to the point where the doctors were happy with the size & number of my eggs on my ovary (we had 7!) & the following day I had my trigger shot. We then went back to Bloem to have the egg retrieval done. This wasn’t as bad as what I thought, although I saw the size of the needle before closing my eyes & that freaked me out a little!
3 days later we were told to go back to the hospital to have the embryo transfer done. Depending on the growth of the embryos, they will do this transfer between day 3 & day 5. It is preferable to do it on day 5 as then they are healthier & stronger, but mine weren’t growing quite as they hoped & they thought it better to transfer them into the safety of my womb sooner rather than later.
We had 3 little embybabies & we decided to have all 3 transferred as they weren’t particularly strong & we didn’t want to lose a chance of falling pregnant this time.
The 2ww was dreadful! Every day I wondered if my sore boobs were as a result of actually being pregnant, or the progesterone supplements I was having to use. Eventually we got to D-day & I did a pregnancy test at home before going in for my blood test. It was positive! I tried not to get my hopes up too high, as we had been told the medication could give a false positive on a urine test.
Luckily for us the blood test showed elevated Hcg levels – I was actually pregnant! We were completely over-the-moon & couldn’t resist telling everyone we knew that the IVF had worked & that I was pregnant. Maybe we were a little premature with telling people this, but everyone knew the journey we were on & had been such a support system for us from day one.
Our first scan showed the sac with a little yolk – one little embryo had stuck around & taken up residence in my womb. We started buying baby things & my mum blessed us with a cot. We were actually going to be parents & we couldn’t feel more lucky! I bought all the pregnancy & baby magazines possible & read up every day to check the growth of our baby. We chose names we both liked & started choosing ideas on how we would decorate the nursery.
At our next scan (on my husband’s birthday), we were given some devastating news. The sac was empty. Our baby hadn’t grown & was no longer visible. He did both an internal & external scan; & unfortunately there was nothing there. He told us to go home & wait for a while to see if I miscarried naturally, or would need to go for a d&c in a week or so. Telling our friends & family was terrible. I still cry just thinking about it. Some people had no idea what to say, & have avoided us completely since then. Others sent messages almost every day asking how we are & just letting us know they are here for us & are praying.
The first Wednesday, 06 January, of 2016 I woke up to go get something to drink, & as I got to the kitchen, I could feel blood pouring down my legs. I had miscarried. I had lost our little bean that we had been wishing & praying for. I screamed for my husband who put me into the shower & cleaned everything up. We phoned my gynae who advised us to go to the hospital. I was admitted straight away & tests etc were done to confirm there was no more baby. I was taken into theatre at midday to have a d&c, whereafter I was admitted into High Care due to excessive blood loss & my Myasthenia Gravis. My gynae was amazing & so comforting throughout this experience. She cried with us, loved us & told us to never lose hope.
I know this has been long, but I ask you to stay with me for a little while more…
“I became the person people don’t want to tell they’re pregnant. I hate that. A friend told me her happy, fantastic news, and just a second later she burst out crying, afraid for how this would make me feel. I hate that. I work really hard to arrange my face in such a way that approximates uncomplicated glee. And I am happy for them, or course. But sometimes just after the happiness is the desperation. Some days are easier than others.”
― Shauna Niequist, Bread and Wine: A Love Letter to Life Around the Table with Recipes
We tried one more round of IVF.
I had to have more medication, and we became pro’s at injecting my stomach wherever we were – in fact we sometimes had to pull over on the side of the road for husband to inject me. Those suckers burnt, but they had to be done at precise times of the day. We took every precaution possible, and decided to keep this round quiet – except for telling our immediate family.
The retrieval went well, and the transfer even better. The doctors were feeling positive about the quality of my eggs, and we were sure this was it.
The eggs didn’t implant.
I wasn’t pregnant.
I was broken, and this nearly destroyed our marriage due to all the stress and emotions we were trying to work through as individuals, never mind as a couple.
We didn’t lose hope, and still thought that one day we would get our miracle.
And then, my stem cell transplant happened. We were warned that the drugs would do crazy things to my body, and we weren’t really sure of what exactly could happen besides the loss of hair.
And then, we had to wrap our heads around the reality that I was now in early menopause. There would be no more chances at having children. My body had officially given up. Guys, I was just over 30 and I was in the thick of menopause – the sweats, the emotional rollercoaster, the lack of periods, the feeling of officially being a failure.
So, now you may be asking what this all means for us.
South Africa has made their adoption laws super strict, and the use of a surrogate requires a High Court interdict to prove that the mother cannot carry the baby herself. There is no easy way through this.
We are forever grateful for our friends and family who have granted us the honour of being godparents and adoptive aunty/uncle, and we love our fur-children with all our hearts. But deep down I will always feel like I have failed as a woman; failed as a wife; failed as a mother; simply FAILED.
Infertility is awful.
“On a planet where for thousands of years, even today, a woman’s worth has been judged exclusively by the productivity of her womb, what the hell is the point of a barren woman?”
― Elissa Stein and Susan Kim
If you are going through this currently – I am so f*cking sorry. It sucks balls. There is no pleasant/lady-like way to say it. Cry, scream, laugh, celebrate, mourn – every day is an unknown. And every emotion will be experienced – raw.
And if you have made it all the way to the end of this blog, thank you for taking the time to read my story. Thank you for learning about our baby bean, and for allowing me to remember him/her with all the love in the world.
We miss you. We mourn you. We will never forget you,
I met Nick & Nicole some time ago through a media event that we were both at, & they then had me over for an interview about invisible illnesses. I was immediately drawn to their love & passion, & I clicked with them on a level usually reserved for friends for many years. We laughed, teased each other & felt so comfortable finding our groove together. I knew that I wanted to spend more time with them & learn more about their business, Smergos.
Time has run away from us as we all have busy lives with work, doctor’s visits & life plans (ahem – Nick’s wedding coming up!). So I was so thrilled when they reached out to me & asked if I would meet them at Starbucks for a chat one weekend. What was meant to be a quick half hour meeting turned into a 2 hour giggle fest (with plenty of frappuccinos!) along with discussing plans going forward.
The first to come out of the meeting was that I HAD to do a blog on them. I have never met people like them before, & their business plan is amazing. They are changing the world for differently-abled people, & showing society that we all belong together whilst constantly inspiring motion.
The second is that they are offering a discount code on their Smergos Life products to everyone who reads this blog (more on this at the end…).
And lastly, we are partnering up through the Rare Bear Project! You can now add a Rare Bear to your order through Smergos, & we are one of their chosen charities that they will be giving back to. How flipping cool is that?
Your names: Nick (Nicholas when I’m in trouble) Smit & Nicole Vergos
NS: I was injured in a car accident when I was 6 months old and as a result I have Cerebral Palsy with Hemiplegia. Basically this means that the right side of my brain was damaged which has affected the left side of my body. However, I don’t let this get in the way of living life. I have Bachelor’s degree in education with majors in Maths and Biology. I run a small tutoring company & Smergos and teach part-time. I’m a professional speaker. I love music and dancing (especially Salsa) and I play pool. I’ve also ticked off sky-diving from my bucket list.
NV: I was born with a genetic condition called Osteogenesis Imperfecta (OI), otherwise known as Brittle Bones. To be put simply, it means my body produces some type 1 collagen but not a sufficient amount, and as result my bones are not as strong as the average person’s. There is currently no cure for OI.
I’m an account manager at a leading global market research agency, specialising in consumer insights. Although my goal is to eventually be involved in Smergos fulltime. I’m motivated by change – I’m always looking for ways to keep moving forward and to improve my self-development.
Tell me a bit more about Smergos: Smergos changes lives by designing, manufacturing, donating and selling accessories for wheelchairs. The products are very diverse as some are functional while others are to express one’s personality or are specialised to suit disabled sports teams and we even have a range of products that are for everyone, not only for those with a disability. We have recently also started working on an accessibility rating platform that offers an app to the public, accessibility auditing for buildings, etc as well as connecting the owners of these spaces to companies that can help them upgrade their facilities to improve their accessibility.
We are both very passionate about Smergos as we both have a disability and understand the challenges that face those with disabilities on a daily basis. Our slogan is ‘Inspiring Motion’ as we aim to do this in the disabled community as well as help break down the barriers in society between those with and those without disabilities.
Where did the idea for this business come from: The Smergos story began one morning back in 2012 as Nick was thinking about what he could give Nicole on her next birthday. He recognised that she often struggled to carry or keep her belongings on her lap while using her hands to push herself in her wheelchair. A wheelchair bag was the obvious solution. It would be functional yet also original and distinctively Nicole.
The more he thought about the idea, the more Nick began to see far bigger possibilities. That afternoon, he called Nicole and asked her if she would like to make something that could change lives. Her response? “Definitely! I’m in!” The concept of Smergos was born.
Why the passion for this industry: Through our personal experience as people with disabilities we have always found it difficult to find products that are created for us or work the way we need them to. We are tired of this being the case. Why can a person without a disability go to the shops and find, for example, at least 10 different bags to choose from? However, when it comes to one for a person with a disability we can’t find anything and have to scour the internet and then pay exorbitant prices, because it’s a ‘specialised’ item.
Why are your products so unique: We didn’t take any existing product (especially those created for a person without a disability) and try fit these onto a wheelchair. We design our products from scratch. Often sitting in my lounge and strapping paper / material onto Nicole’s wheelchair and doing some intense problem-solving.
We also try create a range of products that are functional but also some that help portray the personality of the person in the wheelchair so the wheelchair becomes an extension of them and not this dreaded appendage.
Where can people buy your products from: On our website – Vensy E-mall and Takealot coming soon.
Tell me more about the different parts of Smergos:
Smergos Original – Products specifically created to fit onto a wheelchair or to be used by a person in a wheelchair
Smergos Sport – Products specifically created to fit onto sports wheelchairs and help them train, excel during a game or for comfort.
Smergos Life – Products created to suit those with or without disabilities. Because we always want to make a person with a disabilities life easier we created a ‘Buy-1-give-1’ model for only this range of products. This means that for every product sold a product will be donated to a person with a disability who needs our products but cannot afford them.
Smergos Electric – In the next few years / sooner we aim to develop a range of products that can be fitted onto a normal wheelchair and give it some electric features. I can’t tell you more than that – The rest is a secret.
Quote you live by:
NS: “The greatest risk is not taking one.” – Unknown
NV: “We are here to laugh at the odds and live our lives so well that death will tremble to take us” – Charles Bukowski
Anything else you want to add: In our effort to break down the barriers between those with and those without disabilities we are hosting social gatherings once a month (usually the second / last Sunday of the month). Please follow us on social media to see the details of these events and see you at the next one.
Our big goal is to eventually open a ‘Accessibility Store’ in a shopping centre. It will offer a range of products (ours & other suppliers) to suit all disabilities.
Aren’t these amazing? And isn’t it great that differently-abled people are now FINALLY getting some fun additions to make their lives a little easier?
And now… You can get your very own laptop bag from Smergos Life. “Smergos Life offers a range of products that anyone can use. For every product you purchase from Smergos Life, we’ll donate a wheelchair bag to a person in need. This buy one, give one model is exclusive to Smergos Life.”
My discount code is “FLOWER” here so let’s spread the love during this month of love. Together we can make this world a better place!