Ruth Rafferty and Adam Rowland in conversation: 23rd April 2023 - Part 1
The day after the rally, Ruth and Adam very kindly allowed me to record them in conversation with each other about their experiences.
Ruth had a severe allergic reaction to everything after her vaccination, even water, going into anaphylaxis. she has to be very careful about not eating foods high in histamine, as they are now dangerous for her. She was later diagnosed with MCAS amongst other things.
Adam's severe reaction is still to be nailed down, and it would be helpful if he could just get the tests he is supposed to have had months ago. While we were traveling up to Scotland, he received a text from the one consultant who is trying to help him, which contained a link to a Youtube video. The consultant wrote that maybe this is what is wrong with him, which illustrates just how ridiculous (and frightening) the situation in which he finds himself is.
I have broken up their conversation into smaller chunks for ease of viewing. In this part they talk about the NHS. It is quite striking how the skewed incentives within the NHS lead to a patient's needs taking the back seat. There has to be a better way of doing things than this.
Just some of the previously rare diseases that seem to have become more common over the last couple of years...
"Mast cell activation syndrome (MCAS) causes a person to have repeated severe allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurologic systems."
https://rarediseases.info.nih.gov/diseases/12981/mast-cell-activation-syndrome
"Mast Cell Activation Syndrome (MCAS – also known as Mast Cell Activation Disorder) is a relatively unknown condition that may affect some people with Postural Tachycardia Syndrome (PoTS) and is caused by abnormal mast cells or abnormal release of chemicals contained within them."
https://www.potsuk.org/about-pots/associated-conditions/mcas/
Vaccine-induced thrombocytopenia and thrombosis (VITT) Support for patients family members
"Vaccine-induced immune thrombocytopenia and thrombosis (VITT) is a new, rare condition that has been identified after COVID-19 vaccination, so far affecting approximately 1:50,000 AZ vaccine recipients under 50 years old, and 1:100,000 for those ages 50 years and older in England. The effect of the blood clots can be devastating, and we want to ensure our patients and their families are supported to respond to the impacts of VITT, both mentally and physically."
https://www.england.nhs.uk/coronavirus/documents/vaccine-induced-thrombocytopenia-and-thrombosis-vitt-support-for-patients-family-members/
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