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Tag: rare disease

Thirty, Flirty & Infertile

***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).

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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.

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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.

It wasn’t.

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.

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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,

Mum & Dad xxx


 

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Smergos

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.

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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?

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Your names:  Nick (Nicholas when I’m in trouble) Smit & Nicole Vergos

Business name:  Smergos PTY Ltd

Social Media Handles:  YouTubeFacebookInstagramLinkedinWebsite

Tell me a bit more about each of you:

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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 “FLOWERhere so let’s spread the love during this month of love.  Together we can make this world a better place!


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Smergos Story

Co. profile Nov 2019

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Hospital Spoils

I have been admitted into hospital over 100 times – easily.  The first year of my diagnosis saw me spending more time in hospital than I did at home.  I have had over 20 operations (I can’t remember the exact number & to be honest can’t even remember all the operations – I try to block these from my memory once they are over).  This means a LOT of time spent lying in a hospital bed.  It means sore muscles, hairy legs, uncomfortable beds, greasy hair, being run-down & generally just feeling rotten.

It means long days of doing nothing, & not wanting to actually watch one more TV show that is on repeat.  I often beg my husband to just rub my feet as I crave human touch & my feet ACHE from not being used.  So when I saw a new business here in Joburg North being advertised, I was super excited.

Hospital Spoils is a relatively new business that will come to you in hospital, or whilst you are recovering at home.  In fact, they even came to my office in Broadacres to pamper me there.

They reached out to me to offer me a treatment of my choice (of course I went for a shoulder, neck & head massage!) & I knew that my fellow rare warrior friends & hospital frequent-ers would be super excited about this idea.


Your name:  Dr Claire Mitchell – Specialist General Surgeon and CEO & Sarah Saffy – Managing Director

Business name:  Hospital Spoils

Social media handles:  WebsiteFacebookInstagram

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Tell me a bit more about your business:  Hospital Spoils is a specialised mobile spa with medically trained therapists that offer manicures, pedicures, massages and hair wash and blow – dry’s right at your bedside. Started by a Specialist Surgeon, servicing hospitals, clinics, retirement and private homes in the north of JHB and surrounding areas. Perfect for people in hospital or at home – new mom’s, post op, elderly, unwell and those who are house bound.

Where did the idea for this come from:

 

What area do you work in:  Hospitals, retirement villages, old age homes, rehab facilities and private homes in Joburg North.

How can people book you to come to them:  Call or WhatsApp 083 778 4741

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Are your therapists trained beauty therapists:  Yes and hair stylists!

See full pricelist here:  HS Digital Leaflet Insert 2

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I was so impressed with the level of hygiene & care that was taken throughout my treatment.  And you can tell that the therapists really care about what they are doing – it is so much more than a job for them.  They really want to help you feel better about yourself, & take away some of the stress that you have been experiencing.

My favourite part was that I was constantly kept informed via Whatsapp on what was on offer, who my therapist would be, confirmation of my appointment, an invoice, & then I was sent a message following my treatment to rate how it went & if they can improve in any way.  Customer service is of the utmost importance – especially in this area & when you are dealing with people who are either sick or recovering from some downtime.

I can absolutely say, without any hesitation, that I recommend Hospital Spoils for anyone & everyone.  And I know who my first call during my next hospital admission will be to!

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Get Me To 21

Even if you are not directly part of the Rare Disease Community, I am sure that you have heard of Jenna Lowe.  Perhaps you were even lucky enough to meet this young lady.  Maybe you have visited her website, & became an organ donor when you heard from someone waiting for her lungs how dire the situation is.

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Gabi & Jenna Lowe

Jenna was an inspiring young lady who never allowed her diagnosis to hold her back.  She lived life to the fullest, encouraged & inspired others, & was constantly striving to create awareness around organ donation.  You see, Jenna had Pulmonary Hypertension.


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Jenna was young, bright, beautiful and articulate. Lead SA’s Youth Hero of the Year in 2015, her death was mourned by thousands of people whose lives she had touched. During her short but full life, Jenna and the Lowe family raised much needed awareness around this rare and devastating disease, highlighting the dire need for access to medication and organ donors locally. Although desperately ill, Jenna became the face for organ donation in South Africa through the hugely successful #GetMeTo21 campaign in which she invited all South Africans to attend her 21st birthday celebration by clicking on a link to become an organ donor. Tragically Jenna died three months before reaching her milestone.

Brilliantly written, riveting in all its terrible truth and pain, in this brutally honest memoir Gabi Lowe shares her family’s desperate fight to save Jenna’s life. Despite their tragic loss, Get Me To 21 will inspire you to believe that the ability to face even the darkest and most unimaginable lives deep within us all.

Author: Gabi Lowe studied a BA before embarking on a successful career in media and marketing. In 2011 she was catapulted into a totally new world, that of rare diseases, big pharma and transplantation, filled with massive challenges, learnings, losses and love. Gabi is now a sought-after life coach, facilitator of workshops on emotional resilience and inspirational speaker. She lives in Cape Town with her husband Stuart and daughter Kristi.

(source:  GetMeTo21)


When I heard that Gabi Lowe was coming to Joburg for the launch of her book, I knew I had to be there.  #RareWarrior friends would be there, as well as the CEO of Rare Diseases SA.  Jenna’s story had touched me & I was desperate to learn more about this girl who has left such a footprint on the world.

I had tissues at the ready, & appreciated the courage of the entire Lowe family for allowing us a glimpse into the battle they went through as an entire family.  Gabi read from the book for all of us (this is where the tears started), & told us the hard truth about the lack of resources & awareness in South Africa.  There were fellow PH patients in the crowd, as well as another mum who has lost 2 of her children to this dreadful disease.  When I saw Shaakira, my heart broke – I had known her daughter & here she was supporting her “family” & standing up in support of the Lowe’s.  They had leant on one another throughout their journey’s & now they are both grieving the loss of their precious children – how is that fair?

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Humayra Bodhania


Following the launch, I needed some time to process what had been discussed before beginning the book.  I knew it would be a tough one to work my way through, & emotionally I did not know if I was ready.  Realising that a lot of this fear stemmed from the fact that I am relapsing & fearful of what this means for me & my family, I knew I had to just suck it up.  This is a book of bravery, a book of loss, a book of pure love.

Within 2 days I had finished the entire book.  I literally could not put it down, except to clear my head for a few moments when it all became too much.  I felt completely drained as I finished the last page & I was amazed at the strength of the Lowe’s.  Jenna’s story needed to be told, & needs to continue to be shared.  This book was honest & raw, & included excerpts from Jenna’s actual diary.  It showed the truth of what it is like to have a Rare Disease & the fear of the unknown. It showed the hope of a miracle, & the emptiness that follows a loss that cannot truly be explained.  It showed courage.


This book has changed my life – for the better.  And it is a book that will keep Jenna’s legacy alive, whilst continuing to touch everyone who reads it.

The book is available online, or from local book stores in South Africa – I got mine from Exclusive Books at the event itself, & have seen it many times since then.

I leave you with the song that Jenna wrote, & her sister Kristi performed.


Read the book, join the Facebook Group, & sign up as an Organ Donor.  Be the change.


 

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Rare Disease Day 2019

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Being a #RareWarrior means that today is one of the most important days of the year.  As you can tell by the title, it is International Rare Disease Awareness Day.  Being part of Rare Diseases SA means that I get to see behind-the-scenes & I am constantly in awe of just how much this organisation does.  When you mention that you have a particular rare disease, or are trying to raise awareness for one, people often look at you with total confusion & have no idea what you are talking about.  We need to work together to raise awareness & show that we are #AwareAboutRare & #Care4Rare.

According to the Rare Disease Day website, Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some poinRare Disease Dayt in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

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I was diagnosed with Myasthenia Gravis when I was 15.  Before this I was a perfectly healthy child, & never even had flu, chicken pox or any of the other ‘normal’ childhood ailments.  I had never been in hospital besides the day I was born & didn’t truly understand what it was like to be sick or to have to fight every day.  I didn’t know anyone with a rare disease & I was stuck inside my happy little bubble.  I will be the first to admit that I was self-absorbed & didn’t understand people who were ‘sick’.

Why should I try create awareness for something that doesn’t affect me directly?  Because if we don’t all work together to create awareness, then we will forever be stuck in a rut & people with a rare condition will be continue to feel alone & unsupported.  It is so difficult trying to explain to people that you have a Rare Disease & they either just don’t care, or don’t seem to want to know more or show their support.

So please, rock your #Jeans4Genes, buy a sticker, & talk to others about what Rare Diseases are.  Like the RDSA Facebook page & share their posts.   When you read an article or post about a rare condition; read up more & share this on your page so you are teaching more people.  I can’t tell you how much we appreciate this.  It makes us feel like we aren’t alone, & like we are loved.

Thank you everyone for being there for me through this journey & for loving all the Rare Warriors around the world.  You are fabulous!

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Today is the day! Let’s seize this opportunity to create as much awareness for #rarediseases as possible.

There are many ways you can make it count:
1. Wear your jeans and RDD2019 ribbon
2. Attend an event in your area
3. Post your face paint selfie on social media and hashtag #RDD2019 #ShowYourRare
4. Share your story with others
5. Know the facts…and share them! http://bit.ly/WatchTheRealityOfRareDiseases

#BePartOfTheMovement #bethechange #Jeans4Genes

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