I’m a 42 year old lady, from Sheffield, South Yorkshire UK.
I was born with congenital birth differences that affects both hands & forearms and had major surgery age 3. I then continued to forge my own way through life to the point of being a very successful, passionate & natural hairstylist with my very own salon.
I was a master of my craft & I loved every second of the 10 years of living my dream. Until one day in August 2017 my life turned upside down, back to front & inside out!
Last year I was diagnosed with Moderate Heart Failure! Yup ! I had NO signs or symptoms & it was only really detected by chance!
After that diagnosis things have moved pretty rapidly over the last 12 months with other serious comfirmed diagnosis’s including Inherited Heart Disease – Dilated Cardiomyopathy.
It’s suspected that I was born with Cardiomyopathy and as it went undetected for near enough 42 years, sadly resulted in my heart to start failing to work properly.
There’s no cure and sadly will only deteriorate in time, as everything natually does. I know that I’m on a time limit & I’ve made my peace with that! Well you have to, Don’t you? It would completely screw you up otherwise …
But then comes the BIG kick in the stomach!
I was also diagnosed in April 2018 with Holt-Oram Syndrome (Hand & Heart Syndrome). Apparently there’s a known genetic link with infants born with upper limb defects (especially missing carpal bones) also having Heart Defects!
I had never been checked my entire life until last year , and only as part of a elimination process, to try to identify the underlying cause of my circulation problems.
Since then I’ve also been diagnosed with a rare autoimmune & Connective Tissue Disease.
I also finally had the mottling on my arms & legs diagnosed by the Geneticist as Livedo reticularis.
I have suffered with for 15+ years and has progressively worsened, it never disappears completely and over time has deepened in colour! (See Pic)
I’ve had a “extra” protein identified in my blood that may be responsible for the mottling on my arms & legs & these are just a few of my health issues.
The list of my consultants is quickly growing longer which includes Consultant Cardiologists, Consultant Rheumatologists, Consultant Geneticists, Dental Professors & Consultant Periodontists, ALL of which agree that they are ALL very confused and not at all sure of whats actually happening with my body & health and why.
Therefore do not have any sort of prognosis, treatment plan or much hope for my future.
I am on very limited heart medication, only two tablets Ramipil & Ivabradine as I’m intolerant to any other medications (including beta blockers) that are currently available on prescription via the NHS.
So I choose to self medicate with cannabis, especially now because of all my health issues & to keep me sane!
I’ve smoked cannabis regularly for 20+ years and even though its always helped massively with my mental health, it is now also helping me immensely with physical pain along with doing its magic on the inside!
Mind, Body & Soul
Lisa, Age 42, U.K
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