The Guide Of My Life


, , , , , , , , , , , ,

Just as we arrived at the Vets , Munch decided that it was then that he would perk up. Popping the boot open we were ready to carry his six stone self into the waiting room but he had other ideas. After spending the last two days vomiting, not eating and having zero energy , we kept in contact with the Welfare Officer at Guide Dogs who advised us to have a check up with the Vet. As if he had entered a magical healing portal in the boot of my car, Munch decided that he would make the vet disbelieve everything that I had said was wrong with him by wagging his tail and sashaying his trademark bum wiggle into the room as if nothing was wrong. Just like a child whimpering in pain walking into A &E and running out a short while later after discovering nothing is wrong with them, Munch decided that he was instantly better just like that.

Admittedly, the miraculous healing is exactly what I wanted to happen. Honestly, the night before I was pretty upset and thought that it was more serious that a stomach bug. Munch not eating is unthinkable. A packet leaving the fridge makes Munch appear out of thin air and any dropped food is guaranteed to end up in his mouth before it can ever reach the floor so when Munch does not eat, it is serious. In fact In 5 and a half years it has never happened. Not even the whiff of toast which always gets him up onto his paws had no effect. So when he showed improvements I was ecstatic. A quick anti sickness injection and some prescribed probiotic helped his healing even more and within the day he was back to his Munch like mischievous way . By his third “Munch, No!” Moment of the day, I knew he was going to be totally fine. As the soil from the garden flower bed flew through the air splattering me like rhythmic rain as he dug away just for fun, I secretly loved every splatter as I knew my Munch was back.

Everyone who has ever been blessed to be owned by a pet (let’s be honest, they own us more that we can ever own them ) will know how hard it is to see them ill even for a short while. When you are paired with a Guide Dog, it is at a deeper level as they are with us 24/7 and therefore our lives do not function without them. Whilst worrying deeply about if Munch was going to be okay, I had to try and think practically how I was going to be able to go to work without him. Luckily he was well enough to come to work with me after his appointment with the Vet but what if he hadn’t been? Relying on Munch’s healthy self to help me work a full time job I realised, was an assumption of mine that I had never given much thought to. Obviously, his health and well being is and always will be priority but what would happen if everything changed?

Most of the time, I forget I can’t see as I live life to the fullest. At home and in familiar places I move around with ease as I know my surroundings and can explain in detail where everything is due to the familiarity etched into my brain. I work in four different schools and I know the layout of my rooms so well but getting to and from these rooms without Munch is a scary thought. Working in Secondary schoold with up 1,500 pupils, using my cane would have it’s limits as there are so many obstacles that Munch alerts me to every day that my white cane would not be able to alert me to until I hit something or someone. Living with sight loss in a working environment is not the easiest even with a hairy handsome mobility aid like Munch, so working without one can be a challenge.

Life with a Disability can make you dip into the world of independence and dependence in the blink of an eye. When everything/everyone works well, you work well. When hiccups happen , growth can get a little stunted. Not being able to work due to a sick Guide Dog may not have it’s own box to tick in my Employee Sick Form but it is a genuine reason that needs to be understood. I am blessed that everyone I work with seems to love Munch and I think that they understand that the teamwork we have helps the dream work. A healthy Munch is key to the life I am able to live today and helps me forget disability and focus more on nothing but ability. Fingers crossed the guide of my life has many happy and healthy years ahead of him and I am lucky enough to witness them ❤

Carefree Living


, , , , ,

Waking up each morning to my six stone hairy soul mate sprawled across my bed as I  hang on with dear life to my allocated few inches of mattress is pure bliss. Even with an outstretched paw attempting to clog up my nostrils as Munch attempts his graceless doggy hug, his carefree attitude is contagious. The eternal expectation of belly rubs and utter adoration from every being around him, allows him to rest in that place of surrender that most of us battle with throughout life. Appreciating the here and now can be that well needed pause button to help remind us that we always have more to be thankful in life than we know. Carefree living emerges from actively embracing the act of surrender.

As we approach the summer solstice and celebrate the light within us that flows inwards and outwards, it is an ideal time to reflect on what really matters in life. Growth and evolution around this time of year comes from exploring what lies in this natural pause button zone in life. Whether or not you celebrate the Summer Solstice , it is a natural half way point in the year to stop and take stock of your life as you live it today. Now that life is returning to normal for most after the pandemic many are realising that life is a constant state of change and in reality there is very little we can do about it. Learning to go with the flow on life is kinder to your soul that battling against the change that will always win in the end.

On a personal level, the idea of choosing stress as a focal point in life seems just to draining. Admitting to ourselves that we choose stress instead of surrendering to and overcoming things peacefully can trigger our ego into denying that we are the ones feeding our stress to keep it alive. Reminding ourselves that we are in control of how we react to situations instead of situations controlling how we react can mean the different between carefree and stressful living.

Having worked in mental health for 27 years in various roles and having the blessing of sight loss (a blessing I will always treasure), I have learnt a thing or two about the benefits of carefree living. Here are just a few tips of how to implement carefree living into your own life

1 Leave go of perfection. The only permanence in life in impermanence so battling against what is inevitably will only lead you to create unhappiness in your life.

2. See outcome as just a bonus. Allowing yourself to enjoy being in the moment and creating a feel good energy in the here and now allows you to ignore the ‘what if’s’

3. Count your blessing. Literally count your blessing by writing down what you have in life and what you are thankful for. Each day try to increase the list by at least 5 things and you can include loved ones physical possessions, memories and anything else that has got you to where you are today.

4. Learn to laugh at yourself. Chances are you are more of a comedian than you think. Think of all the times you have messed up in epic ways and still lived to tell the tale. See mistakes as just trial runs that went a little wonky.

5. Surround yourself by happy people. Emotional vampires won’t help your quest for carefree living at all so seek elsewhere. Changing your outlook and general energy to a more positive one will make you more likeable to others which in turn will natural make them want to spend more time with you.

6. Step outside of your “me” bubble. Remind yourself that the world is not about you but about us all. When we stop and connect to others , we learn to press pause on our overthinking and dramatising of life events that cannot be changed. Entering into the energy of you sharing your world with others equally helps you also realise that your pain in life in not unique but is a shared human experience that people learn to become at peace with and you are no difference.

7. Always choose kindness. Kindness to yourself and others will boost you in every area of life. From increased self esteem, higher immune system and health in general through to positive life chances, kindness can be the change in life you have been searching for. Kindness is a simple cure to nearly every problem in life.

8. Own yourself not others. You are always in full charge of who you are so learn to be at peace with yourself and don’t allow others to define you. The reverse is also true as we should never want to control another as people are not possessions so how others behave or think has nothing to do with you.

Carefree living is not the same as careless living. Caring about the important things in life and leaving go of our need to control things can help us take life back to a simpler way of being. Whether you are seeking belly rubs in life or wanting to use less hair dye on the grey stress strands appearing in your hair take time this Summer Solstice to declutter your emotional baggage and rest in the energy of just being.

Perfection In Chaos


, , , , , , , , , ,

Expecting two children and a dog to look at a camera to give that picture perfect scene was never really going to happen but it was worth a try. We all have these photos of loved ones that look more haphazard than beautifully choreographed, but to me that is the true beauty in life.

The aim of this photograph that my daughter took  was to capture the three youngest members of the family in a happy relaxed pose on a family day out, but what we got was a little different. My beautiful six year old granddaughter Arna-Rae embraced the “relax” challenge while I have been told (as I can’t see the photo) that Munch went for the “happy” look as his well trained nose told him that his ownership of unattended food was imminent. My  adorable Grandson Corey however was having none of it and just wanted to be his usual busy bee self. Arna-Rae just sat back watching it all happen whilst possibly wondering if her brother and Munch would ever listen as good as her. Family life at it’s best.

Personally, I sometimes love a little chaos where perfection should exist as it always offers a Plan B. Our human brains are meant to crave patterns and predictability but I think mine is a little faulty as patterns and predictability can sometimes bore me. When things never go to plan and the universe throws you a few hiccups, it may just be that the original plan was not meant to be. Going with the flow in life can free us from the need to be a slave to perfection. If we learnt to live more in the moment like children and animals then we may have more energy  and motivation for our goals.

A moment  after this picture was taken, Eagle eyed Munch shot off to hoover up some dropped pizza that he had noticed free falling to the ground next to him and step into his litter picking role. Corey had escaped off the chair and was on the search for some new adventures and Arna-Rae headed off to have a glitter tattoo. That perfect photo was never taken but they all seemed perfectly happy with their end results. Taking Munch on family days out is like having another child with us  as although he is fab guiding me safely to where we need to go, I always love the way he does his own thing his own way regardless of our original plan.

I am very excited that grandchild  number 3 is on the way in November to join our ever increasing, busy family and to fill our lives with even more love and possibly a touch of mayhem just the way I like it. Being a blind grandmother means that I never wish for picture perfect moments as I do not know what picture perfect looks like as even chaos looks perfect to me. I do know however that whatever makes them happy, makes me happy. I cannot wait for more action shots of all my grandchildren to capture their true selves as they live in their own moments . With Munch by their sides as their hairy uncle , life will never be dull as they will always have a friend to accompany them in their mischievous escapades.

As Time Goes By


, , , , , , , , , , ,

Life has a funny way of attracting collective themes to you regardless of if you are ready for them. The theme of the month for me has been being asked how long Munch and I have left in our partnership. From random strangers in shops through to my clients who have counselling with Munch as much as me, the question on everyone’s lips tends to be “when will he retire”.

Not one to stick my head in the sand about such issues, the reality of him hanging up his harness has been on my mind since we were paired together 5 and a half years ago. Life before Munch was a total contrast to life today. The fact that I lived with sight loss in relative silence meant I figured stuff out on my own and did not rely on my hairy soul mate to help me out. Even though some people close to me knew I didn’t have 20/20 vision they didn’t know the full extent of my sight loss as I chose not to tell them. Acting in the world as a fully sighted person was pretty tough but I got by for 39 years with only a few broken bones, dislocations and operations so not too bad. There is a time in everyone’s life however that you have to swallow the bitter pill of pride and ask for help. Post pill popping, the universe delivered the best help possible in the form of Munch who had the energy of an Ascended Master in a dogs body. When you get gifted such a life changing gem, it is hard to imagine a time that that gem will no longer be yours.

Pets owners know whole heartedly how their pets become a huge part of the family but with working dogs, it expands to a different level. Without Munch, I cannot get to work, shopping or any other places I rely on him for. If I leave him at home if I go to a concert or wherever with family or friends, he has a dog sitter who knows his needs. If he is sick, I stay home with him. My life revolves around my hairy soul mate at a level I never thought it would. There will be a time however that life will revolve around another Guide Dog and that is a life I cannot yet envisage. In just over 18 months, there may be small rumblings about what happens around retirement for my hairy soul mate that I owe so much to. Our next chapters will be polar opposites as his life winds down and mine will continue to evolve with work and family commitments. We will still be together yet live separate lives.

Guide Dogs can remain with their owners when they retire, go to a family member or get rehomed. There is no doubt that Munch will remain with us as not only would it break our hearts if he got rehomed after retirement but also I don’t think it would be easy to find someone to be patient with his entitled ways. Spending half a decade with Munch has taught me that I am not his owner, just a mere member of his staff. His daily massages, instance on sleeping on comfy furniture, shared lunches and his way or no way attitude to life may be a little much for another to handle so he will stay with us. When I get matched with a new Guide Dog, life will be twice as much fun and full of love. Munch will be happy to remain in play mode with minimal work as he watches the new dog fill his paw prints in life.

As each day passes I am aware that Munch gets a little more attention to help him know that he is loved and appreciated for his dedication to his work. Guide dogs have a selfless role in life ensuring that their partners can live an independent and safe life. Without him, I would exist more and live less. For these last few months or years together in partnership I have a feeling Munch may get a little more spoilt with love and appreciation in many different ways.

Summer Ready Body


, , , , , , , , ,

Munch has been working hard on his perfect summer ready body. Here are a few tips from King Munch himself on what had helped him arrive at a place of pre summer self love.

1. Everything in balance. If you are going to jump up and streal half a pizza from a counter top, make sure you follow up with a sneaky lick at some strawberry ice cream. Munch is adamant that strawberry ice cream counts as 1 of your 5 a day although not everyone would agree. Balance is everything.

2. Only surround your self with positivity. If the people around you don’t love you for who you are, they are probably not your people. If people don’t inflate Munch’s Ego to bursting point by telling him how sweet he looks, they probably won’t get a second glance from the drama King.

3. Embrace your style. Munch’s style is unique on many different levels. From looking like ‘an unusual Guide Dog’ to a non convincing Labradoodle to the untrained eye, Munch can seem more mysterious than run of the mill. Changing from Sashay, to a trot, to a bull like charge, Munch has mastered the art of metamorphosis to suit his surroundings.

4. Lead the way. Among his friends that he plays with each morning before work, he is the ring leader. He compassionately shows his friends the best escape routes to use, the most effective way to become chief ball thief and how to use doggy charm to secure you another ten minutes of play. Become the lead others want to follow.

5. Adapt to your situation. Munch’s harness has been getting a little bit snug on him recently so there was only one thing for it, a haircut. It was clearly his hair that was causing his ever shrinking harness and not his slightly curvaceous body so action was needed. This slight adaption would give him that extra time to get a few calorie fighting extra free runs in or possibly a new notch on his harness belt to allow a little more growth.

6. Get the work play balance right. Munch likes to get rewarded for the smallest amount of work. His sliding reward scale is forever evolving. Laying eyes on his harness, he wants a treat. Getting up off the floor in work to put his harness on to lead me out of the room, he wants some of my lunch. If we go on a walk where he is in harness for longer than half an hour, he wants a two hour free run. The bigger the work, the bigger the play

7. Love the skin you are in. A poster boy for body confidence, Munch never doubts his magnetic charm. Usually the biggest and clumsiest among his friends, he still thinks like an elegant Afghan Hound. Thudding his six stone physique on your lap, he enters his Cavaller king Charles Spaniel version of himself that entitles him to undivided attention. He is not a slave to the boundaries of size.

Subtlety is not his thing, but flamboyancey is. Getting ready for his summer body may not be the route celebrities take but I much rather his version and it seems far more fun so I know which route I will be following this summer.

Reflections on Autism


, , , , , , , , ,

Autism has been part of our lives for the last 20 years and has been one of my greatest teachers. From a keen interest in the subject whilst in school, to a book on Autism literally falling off a shelf in front of me in a library many years ago, it was clear the universe was trying to get my attention. Add to that the fact that my Birthday on the 2nd April falls on World Autism Awareness Day, it was pretty hard to ignore. On reflection, I think it was a signal from the universe that I needed to prepare to step out of my own neurotypical way of thinking to prepare to enter into the neurodiverse way of being that my son and many others would teach me.

Since birth, my son Jaidan showed early signs that he may be Autistic. On one hand he was disconnected from social cues that other babies his age tended to pick up on but could figure out complex predictable sequences where other babies remained oblivious. He seemed to be too placid where other babies his age were more reactive. Jaidan lost his limited vocabulary from 18 months ro 3 years , whilst others expanded their spoken language. Play was repetive and consistent whilst others enjoyed more variety. What was clear with Jaidan though was that he was experiencing life on a far deeper level that other children his age. He had an ability to know things that should have been beyond his age appropriate knowledge. He saw things that his peers were not developed enough to do and made me question much of the negativity that was written about Autism. Could it be that it was more of an ability than a disability?

Fast forward 20 years on, I have not only had the blessing of having many years of feedback from Jaidan on what daily life is like for him as an Autistic young man but I have also learnt from a large number of my clients through work as a School Counsellor. Such a diverse viewpoint has helped me reflect on how my understanding of Autism has moved away from many textbooks usually written by neurotypical authors, to a deeper knowledge of what life with Autism is really like. Here are just a few myths that exist around Autism

– Autism has a stereotype .

Forget Rain Man, Sheldon Cooper, the ‘little bit of Autism in everyone’, the little professor or the eccentric, Autism doesn’t create a type. When we look into the Neurodiverse world in Neurotypical ways, we take our preconceived ideas with us which are not always right. Stereotypes exists in both the Neurodiverse and Neurotypical worlds and are not always true.

– Low and High functioning Autism differ

Autism is still Autism regardless of where people are on the spectrum. You can’t be a little bit Autistic anymore than you can be a little bit pregnant. Some may be affected in more than one area of life or to a greater severity but a diagnosis is still a diagnosis. In some instances , those who are seen as being higher functioning have far less support so can struggle more.

– Autism is life limiting

It is more accurate to say that people’s perception of Autism is life limiting. By approaching Autism with fear and judgement, that viewpoint extinguishes the much needed support that people need to reach their full potential. People with Autism can do anything that they wish to just as anyone else can.

– There needs to be a cure for Autism

Autism is Autism is Autism. Autistic individuals do not need to be fixed but maybe the ableist movement does. There is nothing ‘wrong’ with Autistic people it is just wrong that people think there is. Maybe us Neurotypical people see things in a faulty way and Neurodiverse people see it the right way. Who knows?

– Atypical communication comes from a place of lack.

Silence can be golden in the field of communication. Silence can be a person processing and reflecting without the need for giving constant feedback. Just because communication may be different between Neurotypical and Neurodiverse people, it does not make it faulty.

– Independence can be difficult

This may be true for some but not all. Independent can be hard for Neurotypicals as well so is not Autism specific. On the contrary, many Autistic individuals have very good independence skills as they have learnt their own way of being in the world that suits them best.

20 years of living with Jaidan has taught me that anything is possible. As he completes his second year in his Philosophy Degree and prepares to leave in a few months to study abroad for a year in Hong Kong, I feel that nothing anyone ever told me about Autism considered this. Jaidan is his own person who is perfect in every way. I cannot imagine a Neurotypical version of himself as it really wouldn’t work. From being classed as moderately/severely Autistic aged 3 to living independently in university and managing well, I don’t think we should ever predict the capacity and capability of another. Life can be challenging at times but it can be challenging for us all. His Autism can add an extra layer to these challenges but he keeps showing up to cut through them. Jaidan owns his Autism just as he should. It is his alone to make peace with it throughout his life.

Autism is a field that only the experts know about and these experts are the Autistic people themselves. Happy World Autism Awareness Day 🙂

The Peace in Grief


, , , , , , , , ,

My mother passed away nearly a month ago and Munch has not been the same since

Just as his picture took pride of place next to her bed, her loving imprints remain treasured in his heart. As he lays on her couch that now lives in our home, he connects to her scent that belonged to her alone. Her beloved soft toys now belong to him as he keeps them close to remind him of the times where death was a concept not yet known.

The atrocity of grief hit him immediately as he lay crying beneath her hospital bed moments after she passed, as he tried to anchor her soul from transcending to a place without pain. His whimpers have only now begun to quieten as he adjusts to life without her beautiful physical form as he enters into the peace in grief.

The whimpers were far from quite at her funeral as he along with loved ones said goodbye to one of his favourite animal whisperers he ever met. His heartbreaking goodbye echoed into the ground as she was lowered to lay in peace knowing now that she now lived elsewhere. This new home will be a place we will visit often and continue to bless with love and eternal gratitude.

The alien concept of apathetic hunger is now leaving and being replaced by his usual ravenous raids on the edible and non edible world as he reminds himself of the food lover he once was. His personalised Bach rescue remedy made by a friend is slowly beginning to make his tail propel as it once did pre-grief. Slowly but surely the peace in his grief is resetting him to learn to live with the loss of a treasured member of his pack.

Grief is more varied than prescriptive, where rules do not exist yet coexist all at the same time. The sacredness of life runs deep across species and is felt in multidimensional ways that we will never truly know. Our grief is a personal experience that will never match another identically but can unity souls that once were estranged.

Resting alongside Munch in the peace in grief has deepened our bond even more as we experience this as one. Dogs grieve not just owners but anyone within their lucky pack that have shared moments in time that just belong to them and nobody else. Peace is a place that can be found anywhere even where you would least expect it. When we learn to rest in Peace in life, we can learn to be at peace with grief.

The Living And The Lived


, , , , , ,

We may never know the peace in death until we become it.

We forget to see the oneness of all until we arrive in it.

We underestimate the power of breath until we are without it.

We are not them and they are not us, but we will experience being both.

When bridges are crossed and wings are gained, the circle completes.

When the chapter of pain ends, the new chapter in the after party begins .

When souls return to the one true home, there can be nothing but bliss.

We are not them and they are not us, but we will experience being both.

They pass into a place where conciousness has evolved into purity

They are received with unconditional love by those who are waiting

They are free to live their dreams which they could never do on Earth

We are not them and they are not us, but we will experience both

Let peace be present on both sides of your bridge

Connect to each other to feel the oneness of all, no need to wait

Breath into each moment to live with passion

We will be them and they were once us, and we will experience both

The Blackout Bouncers


, , , , , , , ,

When others around are falling apart due to blackouts from power cuts that storm Eunice has brought with her, I am totally at ease. See,  the beauty of being blind is that we always know a different  way. If the sighted stick with us, we can become  their blackout bouncers!

People with sight loss can come in handy in lots of different ways. My friend still laughs at the time when she was getting worked up in the darkness of the cinema  when she was  unable to find out which way to put her cardigan on. I swiftly took it from her, felt for the label and stitching to ensure it was the right way around and helped her on with it within a matter of seconds. To me, feeling for such cues is common sense whilst she saw it as a super power. We had very opposite reactions in that moment.

Learning to navigate the world through  memory alone means that I have masses of imaginary  maps floating around my mind most of the time. I will always remember the amount of steps, locations of doors, distances between 2  points and much more in places I have visited as my eyes cannot let me know so I have my own techniques. Anyone who needs to be led around safely during power cuts , you are more than welcome to grab on to me and we can recreate the Conga dance as I steer you to where you need to go.

I can usually identify an object by feel within a  nano second so if you need to find the lighter to light your  candle, I can help. Need to identify items of clothing from the  description of the material, stitching etc, I am your person!! Need to find an object in your bag without being able  to see? Not a problem, leave it with me. Hearing whether you have turned the hot or cold tap on? Couldn’t be simpler. Where there is a will, there’s a way.  Sight alone is not the only way to navigate in the world that only shows us a fraction of it’s workings. When we learn to discover the world beyond sight, we are offered the true meaning of life.

Listening to how full a cup is and when to stop pouring a drink is second nature to me so let me teach you how. Dropped a coin and trying to find it? I will show you the area and tell you which coin you have dropped from the size and thickness of its sound. If you hear someone approaching, I can help you identify them from their unique footsteps and generally what footwear they have on.  The very being of both the sighted and sight loss community in the world, bring knowledge and experiences that can help us learn from one another.

The Blackout Bouncers are always on hand to help you through a momentary loss of sight. We welcome you into our life with open arms and heart. So when people say in a derogative way that you won’t get anywhere when the blind lead the blind, maybe they have never tried it. They are the best blackout bouncers around to keep you safe 🙂

Marfan Syndrome Awareness Month


, , , , , , , , , , ,

February is the month dedicated to the heart. Not just due to the fact the Valentine’s Day is nestled into the middle of it , but it is also Marfan Syndrome Awareness month.

With the heart being one of the main organs at risk in Marfan Syndrome patients, raising awareness of this complex and life changing Syndrome is a constant must. With Marfan Syndrome being one of the most common connective tissue disorders, it is still baffling how diagnosis’s are still missed in 2022 , with some people only getting diagnosed at the end of their lives. Admittedly, not all Marfan’s patients present with classical symptoms (the weird and wonderful world of syndromes in general), but if raising awareness can save at least one life then it has been worth it.

Due to the fact that Marfan Syndrome affects the connective tissue in the body , there is not much within the body that is does not have an impact on. As the connective tissue binds structures together , supports the organs and gives a Framework to the body as a whole it is pretty tough to ignore it. Marfan’s can affect anything from the heart, lungs, eyes, bones, joints, blood vessels, skin, gastrointestinal tract to name but a few. Luckily, most people will not be affected by all of these but whichever ones they do suffer with can have a huge impact on daily life.

Some of the most common physical signs to look out for with Marfan Syndrome are

– Tall and Slender build

– Disproportionately long arms, legs and fingers (arachnodactyly).

– Pectus Carinatum (breastbone sticking outwards) or pertussis excavatum (breastbone growing inwards).

– Heart abnormalities (from murmurs, leaky mitral valves through to Aortic dissection).

– Scoliosis and other spinal issues

-High arched palate and over crowding of teeth

– Extreme Myopia (nearsightedness ) and early onset cataracts and glaucoma.

These are the most common physical symptoms and from this, a number of complications can arise. From Aortic dissections to pneumothorax. From constant dislocations to pelvic organ prolapse, life with Marfan Syndrome can always give you surprises. It is probably easier to find things within the body that are not affected by it. From being advised to avoid the contraceptive pill and other medication to not being able to give blood, the impact on health can be a factor. Generally advice is to avoid contact sports (due to risk of injury) , intense physical activity and weight lifting should be avoided. So the knock on effects of this syndrome can invade every part of daily living and yet it is still a condition that not even all medical proffessions are aware of. I know of an ophthalmologist who only discovered he had Marfan Syndrome in his 60’s after having an Aortic dissection repair.

How has Marfan Syndrome affected my life so far? To be fair, in my 44 years of life I have been pretty lucky. I am blind, have had knee and jaw reconstruction’s after dislocations, 2 eye surgeries, scoliosis, multiple breaks, soft tissue damage and dislocations and numerous other injuries. A cardiac episode whilst pregnant and some issues with my lungs. To be 100% honest though, that is nothing to what some people have to deal with due to Marfan Syndrome. Expecting the unexpected is almost my motto in life as who knows what will happen in the future. Pain is the gift of knowing you are alive.

If you have any alarm bells ringing with your health and the possibility you or a loved one may have Marfan Syndrome, please check it out. It could save your life. For more information please visit or visit your GP or health practioner.