When Your Big Girl Pants Fall Down - The Well Connected Collective
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When Your Big Girl Pants Fall Down


When Your Big Girl Pants Fall Down

The Pants Fell Down Completely

Yep not going to lie I had a little meltdown and for the first time I felt scared.

For some reason it now all felt real, I can’t explain why I felt like that as it’s been living hell for 8 years, so it has been real but maybe a label to put on the illness now & also the fact and realisation of the seriousness of this disease just hit me hard.

Tuesday was one long ass day, an 8.30am start at Salford for pre meds then my first IV ERT enzyme replacement therapy.

It went a lot smoother than I anticipated, just a few sweats and shivers and slight nausea that soon passed.

I was talked through the whole process things to expect etc and then about what will happen with the home care side of things.
One more treatment to go at Salford then I get to have the infusion at home fortnightly which will be much easier.

The Prodding and Poking Continues

An hours kip in the car and then off for the afternoon appointments – ECG, Echogram, Bloods & MRI Brain Scan..

Day finally completed at 5pm…. exhausted drained both physically and emotionally!!

There is nothing better when you sleep like a baby, a good nights sleep is just what the Dr ordered then when you wake feeling fresh and ready to tackle a new day!

Fresh Day Fresh Vibes

The new day was the start of further tests and lot’s of supplements arriving, starting on my functional meds journey – this is what excites me!! It drives me to want to do better for myself, my health and for others.

Knowing I can take some control – or I might just be a control freak!!

Blood tests, urine tests all complete Packed up like a pro and sent off to the labs – I joke you not you need a degree to know how to best pee and then how to package it all up safely wow that blew my mind ??? #puzzledbypee

Fingers crossed I get all these results back in the next ten days so then my nutritional plan and supplement plan can all be pulled together to work hand in hand with the ERT.

Private testing and hospital visits

It’s certainly going to be a journey of discovery.

If there is one thing that I am finding out, it is there is so little information on females with Fabry. The disease was always thought to be a male only disease and still it lacks funding, support and scientific findings that could really help females with this disease.

Prevalence of Fabry Disease
Fabry disease is a rare genetic condition affecting about one in every 40,000 to 60,000 men worldwide. Women can also have the disease, but the prevalence is unknown, according to the National Institutes of Health. Fabry Disease News

“One thing: you have to walk, and create the way by your walking; you will not find a ready-made path. It is not so cheap, to reach to the ultimate realisation of truth. You will have to create the path by walking yourself; the path is not ready-made, lying there and waiting for you. It is just like the sky: the birds fly, but they don’t leave any footprints. You cannot follow them; there are no footprints left behind.” ― Osho

I am determined to shine a light and fight the fight of females living with Fabry.

Much Love

Claire xx

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