Not many are aware of the condition Pseudoxanthoma Elasticum (PXE).
My awareness of it has brought much challenge but also many gifts.
As a motivational speaker, I love to help others towards happiness using not only my knowledge but my own life experiences.
I believe that we all have the potential to live exceptional lives.
An exceptional life doesn’t rely on luck or money; it relies on your ability to use adversity as a platform to live a better life.
We all face personal challenge. We all experience loss, tragedy or tough times.
These experiences do not define us, but help to find us. They help us find our strength and resilience. They have the potential to make us better people, living happier lives.
My whole career has been built on adversity.
I thought after 3 significant challenges I’d had my fair share. I didn’t expect the 4th challenge. Nor did I expect to find the best gift of all within.
Four years ago my husband was diagnosed with an incredibly rare genetic disorder called Pseudoxanthoma Elasticum (PXE). This disease causes mineralisation of elastic tissue in the body and can cause significant health problems including sight loss.
A few months after his diagnosis, he began to lose his sight.
Because his condition is so rare, we found it very difficult to find a medical specialist that recognised it and knew how to treat the deterioration of his eyesight.
Repeated hospital visits simply resulted in tears and frustration as we were repeatedly told that they couldn’t find anything wrong.
For a month, I watched my husband’s sight deteriorate significantly.
Watching someone that you love lose their sight was one of the toughest things that I have ever been through.
Watching our son play football one day, my husband admitted that he couldn’t see which one was our son anymore.
Later that same day, I found him standing on the decking in the garden with tears pouring down his face because “the stars were beginning to disappear”.
Even with my coaching knowledge, and experience gained from past challenges this was hard.
Desperately trying to be strong for my children and my husband I carried on writing to M.P’s, calling hospitals all over the country and speaking to other sufferers all over the world via Facebook to get him some medical help.
Between making phone calls and trying to find him help, I would drive my car a few miles down the road to let all the tears out alone before returning home pretending that I was ‘holding it together’. At the time, it appeared as if Pseudoxanthoma Elasticum (PXE) was devastating.
Eventually our local hospital found a ‘bleed’ in the back of his eye which was causing the sight loss. This was the best news because it meant that he could be treated; an eye injection was available to help with this.
A moment of euphoria however was rapidly swept away with the words “Because PXE is such a rare condition, funding for this treatment hasn’t been agreed so therefore we can’t give the injections.
We will apply for funding but injections cost about £900 each so it’s not guaranteed because he may need a lot of them”.
That was the lowest point. But in the darkness that we experienced, stripped back to our souls we knew what we had to do. We had to start really living.
We had to stop worrying about what “we may not be able to do in the future” because of his sight loss.
We decided to bring forward life plans in that moment.
Myself, my husband and our two sons decided to go and visit our daughter who was working as volunteer teacher in Thailand.
Not knowing if he would ever get any treatment as his sight got worse, we boarded the plane for our adventure.
What followed was potentially one of the best experiences of our life.
Back packing through Thailand as a family was a truly wonderful.
Catching the night train down to Koh Samui and watching fire flies dance in the moonlight was breathtakingly beautiful.
Running amongst the mountains celebrating the water festival with locals will never be forgotten. The delight we witnessed on their faces as we ran amongst them brought us such joy. What my husband didn’t see, he felt in his heart.
And a few days later, we found ourselves within a hill tribe area amongst a tropical storm.
Surrounded by nothing but the people that I loved, the gift within our challenge became clear; our challenge had rapidly caused a values re-alignment. This allowed us to see, and feel what was really important to us in life so that we could live life accordingly.
We now live life ‘truly awake’ to opportunity and possibility.
Thanks to Pseudoxanthoma Elasticum we travel abroad as often as possible, in case one day it’s not possible for my husband to see. So we go to the cinema more. We walk more. We live more, and we certainly love more.
My husband did eventually get treatment and has had more than 30 injections in both eyes to help preserve his sight. These help immensely, but his sight often deteriorates again. We have no idea what the future holds, but we know it holds much happiness.
What I’d love you to take from my words is that we should all be living like this regardless.
You do not have to wait to be diagnosed with a rare genetic disorder to learn to live.
Why wait for adventure?
Why wait until the mortgage is paid off to do have fun?
Why wait to smile, laugh and feel truly alive?
Why wait for the right time to do anything?
Could it be that your ‘right time’ is now?
Many lives have already changed as a result of this story.
Sharing these words as a motivational speaker has inspired hundreds to create and sustain positive change in their lives.
Could you be one of these people after reading these words?
I’d love to hear from you if you make changes as a result!