Living with an auto-immune disorder is fascinating and perplexing. It really teaches you the importance of living and making the most of every opportunity you get.
In January 2018, I was diagnosed with an auto-immune disorder called Activated PI3K-delta syndrome. At the time, I walked into the clinic room at the hospital and there were 3 doctors with clipboards asking various questions. I am sure you can appreciate that this can make a person nervous at the very least.
Activated PI3K-delta syndrome is a rare primary immunodeficiency disease typically leading to recurrent severe bacterial and viral infections. Recent research shows that many people with this auto-immune disorder usually die in infancy so I guess I should count myself lucky to be alive. At the time, I was 1 of the 200 people in this world diagnosed which shows just how rare this auto-immune disorder is.
In the grand scheme of things, Activated PI3K-delta syndrome does not affect my health or hinder me on a day-to-day basis. It does not shorten my life and it is not contagious. It simply means that I should take extra precautions than the average person.
Last week, I celebrated New Years in Edinburgh and on the flight back, I was coughing up blood. With my condition, this can lead to severe pneumonia quickly. I was unable to get an appointment with my GP and knowing how serious it can be, I emailed my Immunologist who thankfully gave me an appointment at her hospital clinic the same day where I was diagnosed with a severe chest infection.
Since my diagnosis, I have noticed that some doctors can struggle to understand my diagnosis. Every time I am treated by a GP, I must explain my auto-immune disorder and what it can mean. One GP tried to find my auto-immune disorder on the system but there was no category for it. The GP painstaking went through all my hospital letters on the system to find out how they should treat me.
These observations can only lead to me to conclude that one reason for the strain on the NHS is the increase in new health conditions. There are research trials to find how the NHS can best treat these new health conditions. I have been asked if I would be interested in a medical trial with the NHS to determine what drugs would best treat my auto-immune disorder but I have not yet decided whether I am going to take part.
Theresa May recently announced that the NHS is to get an extra £20bn a year by 2023 as a 70th “birthday present”. However, this funding only covers the front-line budgets with around a 10th of the health budget with other bodies for health programmes, including obesity prevention services.
There is a clear disparity because the funding for the NHS is increasing yet funding for the factors that typically cause a strain on the NHS is decreasing. This can only lead to a broken system.
In Rotherham, 2 in every 3 adults are classified as overweight or heavier yet, the NHS obesity programmes for serious patients is no longer available. Obesity can lead to many health issues including diabetes, cancer and high blood pressure which can cause a further strain on the NHS.
There is a clear need for further NHS funding with education and other services to prevent a burdensome NHS. As my experiences show, medical professionals are consistently discovering new health conditions resulting in some GPs lacking the knowledge to successfully treat these health conditions.
My auto-immune disorder does not define me but it does make me more aware. It makes me more aware of the challenges life can present, more aware of the fragility of life and more aware of how lucky we are to have the NHS despite its challenges.