brittle diabetes

The challenge of brittle diabetes

Do you know what brittle diabetes is? We asked one of our readers, Rencia, to share her story of living with brittle diabetes with us.

I was diagnosed as a juvenile diabetic at the tender age of 5 and a half. This was in 1987, when medicine was not as advanced as it is today.

Upon diagnosis, my parents were told that I would have to take insulin twice a day for the rest of my life and refrain from eating sweets, cakes and all the good things. At that point in my life I couldn’t grasp the enormity of being diabetic. I adhered to the diets and adapted quickly to the injections and glucose testing methods. I would often hear my parents discussing how doctors had advised them that I needed to be told that due to my diabetes I would never conceive children.

The strict control became non-existent when my parents got divorced. I guess as a teenager I didn’t understand the repercussions my teenage years would have on my life.

At the age of 19, I began to notice that my vision was being halved. I went to an ophthalmologist who had me undergo all kinds of tests to determine what the problem was. I was suffering from diabetes retinopathy: when the retina detaches from the back of the eye. If not treated as soon as possible, this leads to permanent blindness.  I underwent my first eye operation to reattach the retina in my right eye and had to wait four months with sight only in my left eye. During the 4 months, I lost the vision in my left eye too and for the remainder of those months I had no proper vision, just distorted images in my right eye.

After the operation to my left eye, I became critically ill with hyperglycaemia  (high blood glucose levels). I was in a coma for a few days. At this point I was being treated by my current specialist. He changed my insulin and put me on four insulin injections a day, as well as four blood tests a day. I had a new lease on life it seemed and I would take hold of it with both hands. I began to keep away from all forbidden items and all seemed well.

In mid 2007, I began having frequent lows and highs. Maintaining my blood sugar levels became more and more difficult, and it was worrying as I started losing chunks of my memory when I had a hypoglycaemic episode. I saw my specialist who diagnosed my diabetes as brittle diabetes. He explained that brittle diabetes is when you have hyperglycaemia and hypoglycaemia without much warning. There is no treatment for this, except frequent blood sugar checks.

I am often ill with mostly low sugar levels, ranging from 1.6 to 2.2. I’m seldom able to determine when these episodes occur which leads me into very dangerous ground. Brittle diabetes is a sub-type of Type 1 diabetes, a term used to describe particularly hard to control Type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycaemia or hypoglycaemia.

At the end of 2007, I was experiencing severe tenderness in my left eye and I visited my ophthalmologist who suggested I have my left eye removed as it was shrinking and becoming noticeable that there was no vision in the eye. I had the eye removed and 6 weeks later was fitted with a prosthetic eye.

Against all odds, I conceived my first child in 2010. It was a petrifying experience for me because I was so afraid of something going wrong. On the 4th of October 2010, I gave birth via C-section to my son Tyler. It was a very trying time keeping my levels down. I have successfully had two children – my second pregnancy was easier, though I was hospitalized three times in my first trimester. Once that was over, I maintained constant contact with my specialist and tried my utmost to keep my levels between 4 and 8mmol/l, so that I didn’t have to deal with the effects of my brittle diabetes.

Living with Type 1 diabetes is not as easy as most people thank. It’s a constant challenge and mine is slightly more difficult. However, I do try to rise to each of the challenges to the best of my ability. It’s my great desire to one day receive sponsorship in order to obtain a DAD (diabetic alert dog) – a dog trained to pick up if your blood sugar is high or low by the scent your body omits. Having one of these dogs as a brittle diabetic would be such a great help. It could be a lifesaver.

I urge parents, teenagers and even older individuals to take extra care of their diabetes from day one of diagnosis in order to prevent the challenges I face daily. See your doctors regularly and you could lead a fairly normal life. Diabetes is a life-altering illness, but with the correct care from day one you can lead a fairly normal life.

– Rencia Gabriel-Phillip

Would you like to share your story of living with diabetes with the Sweet Life community? Email us – we’d love to hear from you.