Jay's Fight The 0.017% illness
Donation protected
Teacher with RARE 0.017% autoimmune disease
I am launching my crowd funding campaign ‘Jay’s Fight’ (#JaysFight) to raise funds for the life long management and treatment of my disease, including possible disease modifying trials in the UK and abroad and, in the spirit of teaching and learning, help to raise awareness and donations to relevant charities (British Lung Foundation, Scleroderma & Raynauld’s UK (SRUK) and Mind the mental health charity.)
My story is featured on BBC News (worldwide) and was the MOST READ story with a reach of over 400 Million:
http://www.bbc.co.uk/news/uk-england-berkshire-41034822
My BBC Online (worldwide) had over 2+ Million Views in just 24 hours!
https://www.facebook.com/bbcnews/videos/10155559538027936/
Listen to my story featured on BBC Radio Berkshire with presenter Bill Buckley (full video to be uploaded): https://youtu.be/25trzX05Qys
My story was featured in the Observer News (scroll down for my full campaign story): http://bit.ly/2vXzfBD
My story featured by Charity: Scleroderma & Raynauld’s UK (SRUK) https://www.sruk.co.uk/find-support/personal-stories/jays-fight/
Twenty years ago, at the age of 17 years, I had an incredible opportunity to work with Blue Chip IT Corporates specifically involved with training, development and marketing. I had a keen interest in training and in 1999 went on to the University of Brighton, where I chose to train as a teacher graduating with a BA (Hons) degree in Business with IT and Education. Within months of graduating, my teaching career began at a local girls’ school in 2003, as a Business Studies teacher where I progressed to become Leader of Young Enterprise (YE) and Acting Head of IT. At the age of 25, I chose to further my career by joining a local co-ed school where I was appointed as Leader of Pupil Learning in IT (Head of IT).
Throughout my teaching career, I was regarded as a highly dynamic, self-motivated and active teacher – encouraging others to participate in extra-curricular activities, mentoring and entrepreneurship. I had a specific interest in working with children with behaviour and learning disabilities and have mentored many young people into further education and employment. I am super proud of every child I have had the privilege of teaching and grateful for working with some incredible colleagues during the course of my teaching career.
Sadly my full-time teaching career came to an abrupt end, when I started to experience a series of debilitating physiological symptoms ranging from extreme fatigue, cold hands, chronic pain and repeated respiratory infection. I was eventually diagnosed with overlap Mixed Connective Tissue Disorder (MCTD) and Systemic Sclerosis with Interstitial Lung Disease (SSc-ILD) also known as Scleroderma.
This is a rare autoimmune disorder in which the immune system mistakenly views the body’s own tissues as “invaders” and attacks them. My body is at war with itself… “Overlap mixed” indicates that it has features of various connective tissue disorders including Lupus, Systemic Sclerosis and Polymyosotis. The disease is incurable and progressive. Typically, as in my case, it takes a long time to get a specific diagnosis, which can only happen after numerous tests and as the symptoms become progressively worse. I have undergone many tests and seen a considerable number of medical professionals to get a specific diagnosis and seek help on managing the symptoms. At the present time the dominant CTD is Systemic Sclerosis (scleroderma) and my lungs have been severely, permanently and significantly affected (interstitial lung disease). The illness is potentially fatal, life shortening and current treatment can only help to alleviate some of the symptoms.
Having been diagnosed with an illness that has no cure, and is a full-on unforgiving physical, mental and emotional assault on your body and life, it requires a considerable holistic medical care/team approach from physiological to psychological experts. I have a team of medical, fitness and other professionals all of whom are actively involved in my fight against this devastating disease.
My every effort is challenged daily to ‘change manage’ my lifestyle for all levels of relationships from family to friends, colleagues, acquaintances, neighbours etc. With chronic exhaustion and fatigue I am not always able to attend occasions and therefore I miss out on some amazing life events – it is devastating to see a whole day or week go past, when previously on these days I would have managed the IT education of up to 1000 children, team meetings and parents evenings!
I am frequently told: “You look very well”, “You must be faking it”, “You don’t look disabled” or “You’re not disabled you look like a normal person”… does being disabled have a specific look or style?? And, what of those ‘invisible illnesses’ such as rare lung disease?! - I survived an unprovoked physical assault last year that could have resulted in life-threatening injuries – my attackers had no consideration of the possibility that I may be disabled. Unfortunately I lost a tooth which now causes me issues with chewing food well especially as the MCTD has affected my ability to swallow food without choking. I hope by raising awareness for rare autoimmune disorders this furthers both the understanding of invisible illnesses and recognizing them as disabilities.
Over the past few years, I have had a series of difficulties dealing with employment issues, the Department for Work and Pensions (DWP), Insurance companies, to ill-informed people – ‘RARE’ Diseases are not well published, they lack the media spotlight other equally devastating and fatal diseases receive. I am keen to raise awareness of autoimmune disease as it is currently not as efficiently diagnosed as Cancer, Diabetes or Heart Disease, in the hope that sufferers have better prognosis, treatment options and that their disease is recognised by people as a chronic illness which currently has no cure.
I cannot thank enough everyone who has and continues to be involved in my ongoing medical health care needs. My GP (Dr Farah Moiz, Farnham Road Surgery) has been exceptional; without her attention to detail and proactive coordination I may not have received my diagnosis timely – I have no words to thank her and her colleagues at Farnham Road Surgery for managing my condition. I also have an incredible life coach who has taught me much about managing my physical symptoms through positive mental health.
I continue to be under the care of Dr Richard Russell (Consultant Chest Physician) for ongoing monitoring and management of my lung condition. It takes a team of respiratory physicians and experts to save my lungs. Zoe Fox (clinical respiratory physiologist) has been a great help to me in understanding pulmonary function tests (PFTs). Dr Alan Steuer and Professor Christopher Denton (Royal Free Hospital) both consultant Rheumatologists, have been amazing in the ongoing management, treatment options and advice. There really are so many professionals to thank Dr Sassoon Levi (Consultant Gastroenterologist), Dr Dinos Missouris (Consultant Cardiologist), including teams of physiotherapists, nurses, and therapists…
I am so grateful to everyone in my life - Thank You all. From one teacher to future generations, I hope my campaign has a positive and enduring effect.
My friends and family (aka Jay's Team, #TeamJV) will be arranging various fundraising events and activities throughout the year to support my campaign via the Facebook page (@JaysChallege): https://www.facebook.com/jayschallenge/
Twitter updates via: @JayVFight using hashtags: #JaysFight #JayVChallenge https://twitter.com/JayVFight
Some Disease Facts:
“Systemic sclerosis (SSc) is a disfiguring, disabling and potentially fatal rare disease that causes scarring of the skin (scleroderma), lungs (SSc-ILD) and other organs. Worldwide it is estimated that over two million people have systemic sclerosis and it affects mostly women in the prime of their lives, between 25 and 55 years of age. Systemic sclerosis is a complex rare disease with a variable course. It presents with a range of symptoms involving several different organs; this means it is difficult to recognize and this can delay early and accurate diagnosis.” https://www.boehringer-ingelheim.com/respiratory/ssc-ild
Video Prof. Chris Denton:
https://www.boehringer-ingelheim.com/respiratory/systemic-sclerosis/systemic_sclerosis_physician_video
Video explaining SSC/Scleroderma:
https://www.boehringer-ingelheim.com/respiratory/ssc-ild/systemic-sclerosis-animation
Mixed Connective Tissue Disease (MCTD):
http://www.msdmanuals.com/en-gb/home/bone,-joint,-and-muscle-disorders/autoimmune-disorders-of-connective-tissue/mixed-connective-tissue-disease-mctd
https://rarediseases.org/rare-diseases/mixed-connective-tissue-disease-mctd/
British Lung Foundation:
https://www.blf.org.uk/
SRUK (Scleroderma & Raynauld’s UK):
https://www.sruk.co.uk/
I am launching my crowd funding campaign ‘Jay’s Fight’ (#JaysFight) to raise funds for the life long management and treatment of my disease, including possible disease modifying trials in the UK and abroad and, in the spirit of teaching and learning, help to raise awareness and donations to relevant charities (British Lung Foundation, Scleroderma & Raynauld’s UK (SRUK) and Mind the mental health charity.)
My story is featured on BBC News (worldwide) and was the MOST READ story with a reach of over 400 Million:
http://www.bbc.co.uk/news/uk-england-berkshire-41034822
My BBC Online (worldwide) had over 2+ Million Views in just 24 hours!
https://www.facebook.com/bbcnews/videos/10155559538027936/
Listen to my story featured on BBC Radio Berkshire with presenter Bill Buckley (full video to be uploaded): https://youtu.be/25trzX05Qys
My story was featured in the Observer News (scroll down for my full campaign story): http://bit.ly/2vXzfBD
My story featured by Charity: Scleroderma & Raynauld’s UK (SRUK) https://www.sruk.co.uk/find-support/personal-stories/jays-fight/
Twenty years ago, at the age of 17 years, I had an incredible opportunity to work with Blue Chip IT Corporates specifically involved with training, development and marketing. I had a keen interest in training and in 1999 went on to the University of Brighton, where I chose to train as a teacher graduating with a BA (Hons) degree in Business with IT and Education. Within months of graduating, my teaching career began at a local girls’ school in 2003, as a Business Studies teacher where I progressed to become Leader of Young Enterprise (YE) and Acting Head of IT. At the age of 25, I chose to further my career by joining a local co-ed school where I was appointed as Leader of Pupil Learning in IT (Head of IT).
Throughout my teaching career, I was regarded as a highly dynamic, self-motivated and active teacher – encouraging others to participate in extra-curricular activities, mentoring and entrepreneurship. I had a specific interest in working with children with behaviour and learning disabilities and have mentored many young people into further education and employment. I am super proud of every child I have had the privilege of teaching and grateful for working with some incredible colleagues during the course of my teaching career.
Sadly my full-time teaching career came to an abrupt end, when I started to experience a series of debilitating physiological symptoms ranging from extreme fatigue, cold hands, chronic pain and repeated respiratory infection. I was eventually diagnosed with overlap Mixed Connective Tissue Disorder (MCTD) and Systemic Sclerosis with Interstitial Lung Disease (SSc-ILD) also known as Scleroderma.
This is a rare autoimmune disorder in which the immune system mistakenly views the body’s own tissues as “invaders” and attacks them. My body is at war with itself… “Overlap mixed” indicates that it has features of various connective tissue disorders including Lupus, Systemic Sclerosis and Polymyosotis. The disease is incurable and progressive. Typically, as in my case, it takes a long time to get a specific diagnosis, which can only happen after numerous tests and as the symptoms become progressively worse. I have undergone many tests and seen a considerable number of medical professionals to get a specific diagnosis and seek help on managing the symptoms. At the present time the dominant CTD is Systemic Sclerosis (scleroderma) and my lungs have been severely, permanently and significantly affected (interstitial lung disease). The illness is potentially fatal, life shortening and current treatment can only help to alleviate some of the symptoms.
Having been diagnosed with an illness that has no cure, and is a full-on unforgiving physical, mental and emotional assault on your body and life, it requires a considerable holistic medical care/team approach from physiological to psychological experts. I have a team of medical, fitness and other professionals all of whom are actively involved in my fight against this devastating disease.
My every effort is challenged daily to ‘change manage’ my lifestyle for all levels of relationships from family to friends, colleagues, acquaintances, neighbours etc. With chronic exhaustion and fatigue I am not always able to attend occasions and therefore I miss out on some amazing life events – it is devastating to see a whole day or week go past, when previously on these days I would have managed the IT education of up to 1000 children, team meetings and parents evenings!
I am frequently told: “You look very well”, “You must be faking it”, “You don’t look disabled” or “You’re not disabled you look like a normal person”… does being disabled have a specific look or style?? And, what of those ‘invisible illnesses’ such as rare lung disease?! - I survived an unprovoked physical assault last year that could have resulted in life-threatening injuries – my attackers had no consideration of the possibility that I may be disabled. Unfortunately I lost a tooth which now causes me issues with chewing food well especially as the MCTD has affected my ability to swallow food without choking. I hope by raising awareness for rare autoimmune disorders this furthers both the understanding of invisible illnesses and recognizing them as disabilities.
Over the past few years, I have had a series of difficulties dealing with employment issues, the Department for Work and Pensions (DWP), Insurance companies, to ill-informed people – ‘RARE’ Diseases are not well published, they lack the media spotlight other equally devastating and fatal diseases receive. I am keen to raise awareness of autoimmune disease as it is currently not as efficiently diagnosed as Cancer, Diabetes or Heart Disease, in the hope that sufferers have better prognosis, treatment options and that their disease is recognised by people as a chronic illness which currently has no cure.
I cannot thank enough everyone who has and continues to be involved in my ongoing medical health care needs. My GP (Dr Farah Moiz, Farnham Road Surgery) has been exceptional; without her attention to detail and proactive coordination I may not have received my diagnosis timely – I have no words to thank her and her colleagues at Farnham Road Surgery for managing my condition. I also have an incredible life coach who has taught me much about managing my physical symptoms through positive mental health.
I continue to be under the care of Dr Richard Russell (Consultant Chest Physician) for ongoing monitoring and management of my lung condition. It takes a team of respiratory physicians and experts to save my lungs. Zoe Fox (clinical respiratory physiologist) has been a great help to me in understanding pulmonary function tests (PFTs). Dr Alan Steuer and Professor Christopher Denton (Royal Free Hospital) both consultant Rheumatologists, have been amazing in the ongoing management, treatment options and advice. There really are so many professionals to thank Dr Sassoon Levi (Consultant Gastroenterologist), Dr Dinos Missouris (Consultant Cardiologist), including teams of physiotherapists, nurses, and therapists…
I am so grateful to everyone in my life - Thank You all. From one teacher to future generations, I hope my campaign has a positive and enduring effect.
My friends and family (aka Jay's Team, #TeamJV) will be arranging various fundraising events and activities throughout the year to support my campaign via the Facebook page (@JaysChallege): https://www.facebook.com/jayschallenge/
Twitter updates via: @JayVFight using hashtags: #JaysFight #JayVChallenge https://twitter.com/JayVFight
Some Disease Facts:
“Systemic sclerosis (SSc) is a disfiguring, disabling and potentially fatal rare disease that causes scarring of the skin (scleroderma), lungs (SSc-ILD) and other organs. Worldwide it is estimated that over two million people have systemic sclerosis and it affects mostly women in the prime of their lives, between 25 and 55 years of age. Systemic sclerosis is a complex rare disease with a variable course. It presents with a range of symptoms involving several different organs; this means it is difficult to recognize and this can delay early and accurate diagnosis.” https://www.boehringer-ingelheim.com/respiratory/ssc-ild
Video Prof. Chris Denton:
https://www.boehringer-ingelheim.com/respiratory/systemic-sclerosis/systemic_sclerosis_physician_video
Video explaining SSC/Scleroderma:
https://www.boehringer-ingelheim.com/respiratory/ssc-ild/systemic-sclerosis-animation
Mixed Connective Tissue Disease (MCTD):
http://www.msdmanuals.com/en-gb/home/bone,-joint,-and-muscle-disorders/autoimmune-disorders-of-connective-tissue/mixed-connective-tissue-disease-mctd
https://rarediseases.org/rare-diseases/mixed-connective-tissue-disease-mctd/
British Lung Foundation:
https://www.blf.org.uk/
SRUK (Scleroderma & Raynauld’s UK):
https://www.sruk.co.uk/
Organizer
Jay Virdee
Organizer