Living with the NHS: A Tribute; Wolfram Syndrome

I bless the National Healthcare System with all my heart. Especially right now with the whole coronavirus outbreak. The NHS UK has saved me a great deal of struggle and has allowed me to know more about myself.

The NHS provides free upfront healthcare. There’s a vast system of doctors and nurses and other healthcare providers that the system provides for its free up-front cost. All of this is provided through taxes. Now, of course, I don’t currently have to pay taxes.

Growing up in America, nonetheless being fairly young, you don’t realize how much it means to have universal healthcare. The principles around health are also different in America. I would usually see my mother paying the bill at the pharmacy desk or at the doctor’s secretary desk. Yet the most important problem for me was about healthcare and records.

In the states, employers are able to discriminate you by your pre-existing conditions because they pay the health insurance. Yet with the NHS, the UK doesn’t have that policy.

I’ve been around doctors for my entire life. I even once stated that New York Presbyterian hospital was like a second home to me. Being born with cognitive heart disease, I then had appendicectomy, heart valve replacement, aortic root repair, and kidney stones. And that was up until the age of 9. Yet the unsolved problem was my eye vision. I could never correct my vision fully. Countless times we would try at the optometrist with no success. I later went to see a retina specialist who then referred me to a neuro-ophthalmologist. Once we went there and consulted the doctor, the doctor gave us a choice. He asked whether or not if I would want to have a DNA test. My mother and I talked about it and in the end, we decided not to because of the previously mentioned issue.

A year later and we moved to the UK. I was able to get my doctors sorted without much issue, and I was referred to another neuro-opthalmologist. This one, being renowned in England. 

After a couple of years, he finally suggested another DNA test. And of course, now being in the UK where employers cannot discriminate against pre-existing conditions, we decided to go for it. And about a year ago, the results of the test were brought to my mother and I’s attention.

The Doctor discovered that I had Wolfram Syndrome. Otherwise known as DIDMOAD, diabetes insipidus, diabetes mellitus, optic nerve atrophy, and deafness. A rare genetic disease that only about 1/725,000 people contract it. 

Finally, it was known why I could never correct my eye vision fully.

From there on then, my life, medically, has been a little bit of a downward spiral. 

After we got the results, my mother then wanted to test me for the other symptoms of the syndrome. Besides the already known optic nerve atrophy, we found out that I also had a mild case of diabetes mellitus. I had shown no signs of deafness or diabetes insipidus.

And since then, I’ve just been having regular check-ins with doctors. I had recently gone to Birmingham where there is a specialist team of doctors that are currently working on this disease. I am forever grateful for them for their support. 

It’s a challenging experience, going to doctors who have never heard of this syndrome at all. The only ones that may have heard of it are endocrinologists and that would only be because they have Wolfram Syndrome as an extreme case in their textbooks. Constantly having to explain to doctors what you have is scary. Furthermore, knowing that not everything is known about the syndrome is even scarier. I’ve even gone into some situations where I am making an assumption about my syndrome to the doctor when in reality, it was kind of idiotic of me to do so.

And the syndrome will progress. Thankfully I have a very mild case of the syndrome. Compared to others, I have developed the symptoms at a late stage and have milk symptoms. Most of the others have disability engaging in educational environments, difficulty keeping balance, along with a whole assortment of other symptoms. I am just thankful that I am able to live my life the way it is, spend time with friends and family,, and continue my education. 

Recently, my diabetes mellitus has worsened. Before it would be that I just have to watch the carbs that I intake. However, since the past few months, I’ve been having to do insulin injections. Almost every time that I went to the doctors, I came out feeling numb, like the world slapped me with a wake-up call. The time when I was told that I would need insulin, the time that I went to see the nurses who gave me all of the instructions for the use of insulin, the latter coming at a pretty bad time as I was about to leave for university the day after. 

But now, this is the life that I have to live. Every day, getting up at 8 am to take my daily insulin injection, sometimes fully wake other times going back to sleep, having to weigh my meal and the servings that I have on the plate so I can adjust the insulin I take before every meal, having to account for time to take my insulin before I eat, whether it is in front of friends or family, Taking my other daily insulin injection at 8 pm, and all of the stuff I carry around, not to mention having to check my blood at breakfast, lunch, dinner, and before bed. Overall, I usually have to do 5 injections a day, and check blood 4 times. Yet if I even want a small snack like chips I have to take another injection. It’s tedious. I’m not fully used to it but more so than I was before. 

And living in Ireland for university, where there is no NHS, it’s very different. I hate to admit it but I’m almost used to not paying for things. Very bad thing to say of course. Since going on insulin, I get almost everything for free with the NHS including prescriptions that would otherwise have to be paid. Before going on insulin, I would only have to pay 2 euros a prescription, no limit to the contents of the prescription, which was great. This, of course, is provided by the European Health Insurance Card. I’ll try not to delve into the problem of the current Brexit negotiations going on (God help the UK). But now, I just get everything free from the NHS while I have to pay for my prescriptions, as well as any visits to the doctors or to the hospital in Ireland.

I also kind of had the idea of going to the US for a year abroad. However, now with insulin, I’m not so sure of that idea, insulin being ridiculously priced over there. 

And I’ll admit, I have reaped the benefits from the NHS a little bit. However, with all of the bad luck delt into my hand … 

What I really wanted to say was thank you to the NHS for allowing me to live my life in a greater capacity, and allowing me to get out of the previously mentioned downward spiral. It’s truly amazing what life is when there is universal healthcare. I do have plans to travel abroad in the future however of course now I have to see what places also offer the same type of healthcare.

Thank you for reading this ridiculously long post. I would just like to ask you, if you have the time, to donate some money to the Wolfram Syndrome UK trust.

Published by whatsupquark

Just a university student, studying mathematical physics.

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