Shared Stories
I was 20 when I found out I had type 1 diabetes after I had a Diabetes Blood test. And I started losing weight, was always thirsty, and kept going to the bathroom. I felt tired, so much so that I struggled to walk. Inside me, a voice told me that I was sick like my insulin-dependent grandmother who I grew up with. However, I feared a possible negative CBC or Diabetes Test diagnosis.
Until one Sunday in May, I felt sick. The next day, Thomas, now my husband, “forced” me to undergo some tests. The diabetes blood test sugar levels were very high. The impact in the hospital was brutal. They showed me how to inject insulin; syringes were still used at the time. They told me: “If you want to eat, you must learn to take insulin!”.
I didn’t eat that day.
But then I had to accept it: three injections a day, in addition to the necessary constant blood sugar checks. Two years later, I came into contact with St. John and began to be followed by the hospital’s diabetologists. I was given an insulin pump. Eating freely again was a great feeling; the insulin I needed was regulated automatically. The fact remained that I was twenty years old, and it was not easy to have to face the limits of this disease.
I’ve learned to live with it. Regular CBC tests were the key. Thomas and I got married, and on my wedding day, hidden in my white wedding dress, there was the micro infusion in a pocket, now also my life’s companion. The first pregnancy also arrived. It was wonderful. Even before conception, we had spoken to the doctors, and they followed me to keep everything under control. It was a wonderful experience: Sebastian was born naturally, everything went well, and he – now 15 years old – is in perfect health.
We weren’t thinking about a second child, but a few years later, one day, I discovered I was pregnant again. The first thought was diabetes blood testing! I hadn’t followed the checks done for my first pregnancy. My diabetologist followed me carefully every day to bring the values down and keep them low. I did not experience this pregnancy with the same serenity as the previous one. Philipp was born in the eighth month, hypoglycemic, after a difficult and particularly painful birth.
My worries disappeared for a while.
Philipp was a very good child, and everything proceeded peacefully.
Until one day in December, when I was 1 and a half years old, Filippo, despite being unable to talk to me, made me understand that something was wrong. He was very restless; he couldn’t sleep in the afternoon, and at night, I found him in the cot with his pyjamas completely wet with pee. I was very scared and instinctively tested his blood sugar. “HI” appeared on the display, indicating a very high value. We rushed to St John “‘s emergency room.
I couldn’t stop thinking it was my fault as we travelled those endless kilometres from Manchester to London. This was how we met Dr Florence, a diabetes blood test paediatrician, for the first time.
My son is 11 years old today; sometimes, he looks at me with those big eyes and asks me: “Mom, why isn’t Sebastian sick and I am?”. It’s difficult for a parent to explain something like this to their child without a CBC Test or other diagnostic reports. He says, “Yes, mum, I know, I’m like you, and Sebastian is like dad”.
Filippo has always been and still is a serene, happy child.
He asks me many questions but then goes back to playing with friends and dedicating himself to his favourite sport, hockey. The other children around him behave normally, know about his illness and treat him respectfully. Luckily, no one ever made him feel ‘different’. I hope it can be like this in the future, too.
Two years ago, Dr Florence told us about an experimental study that folks who have had Diabetes Blood tests get invited into. It was also soon to begin. It will be carried out by a group of five British hospitals, including St John, to test the so-called ‘artificial pancreas’ in children, capable of preparing the right amount of insulin depending on need. They were looking for patients with Philip’s characteristics and age. We were flattered to be involved and agreed.
The first meeting was held in London and lasted a week. It was a fantastic experience. For the first time, Philip met many other children who wore the micro infusion like him. He told me enthusiastically: “Mom, everyone here has diabetes like me!”. Diabetic children know that they have to learn to manage the disease; by playing and running, their blood sugar levels drop, and they have to stop to restore their values.
His friends at home – not understanding this need for CBC tests – always encourage him to get back to playing quickly. However, everyone knew how to get tested and respect each other’s recovery time. It was a strange and exciting feeling to see them so aware. For Phillip, it was a 5-star holiday. He made many friends, including Olivia, a year younger than him, with whom he established a very strong bond. A second experimental phase followed, and we hope this study will bear good fruit.
Waiting for research to find a definitive solution.
I had regular Diabetes Blood Tests to help understand my body and what my lifestyle was doing to it. For this disease, finally, today, Phillip and I both live our daily lives with a sensor and an insulin pump that make our lives a lot easier. They are small devices, like cell phones or slightly larger, certainly a little intrusive, but they allow us to be much more serene and have less anxiety. Even Phillip has learned to see them as ‘companions’ who care about him, and we say to each other: “Some people have to wear glasses; we have CBC Tests to wear micro infusion!”.
How do we see the future? Every time December 12th arrives, the date of the diagnosis, we think that Phillip has one more year of diabetes and all the problems that this entails.
This is also why we count the days until we find a definitive cure. We believe in research, and we are certain that the day will come when diabetes will be defeated and we will be free from this disease, Phillip, Olivia and all the sick.
With love,
Valentina