Three years ago today I ended up in hospital and was diagnosed with Diabetes, Type 1 insulin dependant. Here is my story (taken from an old version of my website):

Tuesday 30th January 2007

At the weekend mum had sent me a text message to see if I would come and take a look at my sisters laptop that wouldn’t load up. I am the technical support for anything computer related, although can’t always fix the problem. I had felt ill for about two weeks feeling tired and drinking more than I normally would. I told my mum that I would nip down on Tuesday as I had a “study” day from Uni where I am studying to become a Children’s Nurse.

Whilst at mums I was needed a drink every 5 minuets feeling desperately thirsty – like I was in a desert and had not drank for a week. Mum noticed the amount I was drinking and urinating as said that I urgently needed to get it checked it out. I said I would if it continued for a few days.

Dean (step dad) and Mum drove me home as buses are irregular by the time I had got the laptop working. I knew that the local Walk-In-Centre closed in an hour and it was only a 5 minuet walk away, so I decided to go and get it checked out. I thought they would just test me and say that there was nothing wrong. I even said to the nurse that there was probably nothing wrong, but that I just wanted to be checked to be on the safe side.

The Nurse tested my BM which was 22 mmol/l, and told me I needed to go to Accident and Emergency (A&E). I was reluctant to do so as A&E is some distance away from me and because of the disruption to my life it would cause. The Nurse informed me that if my BM was 26 mmol/l I would be in a coma. She insisted I call my mum to take me to A&E, which I did. While mum headed back to pick me up I packed an over night bag (as advised by the Nurse) and rang Uni to let them know.

The day before Kate and I had been to the cinemas and afterwards this desperate thirst had driven me to take the hour walk (there and back) to ASDA to get as much fluids to drink as possible including a 6 pint milk jug and several litres of fruit juices. Thinking back, if I hadn’t decided on a whim to go and get myself checked out I would have gone home and drank those fruit juices, which would of put me in to a coma. I believe I’m very lucky, however my mum believes “it was meant to be.”

Once at A & E:

I am seen by a young, kind looking SHO broke the news that I was likely to have Type 1 Diabetes and that If it was I would need life long insulin. I will always remember his face. He brought me some written information about diabetes. My reaction was a desire for him to be wrong, for it not to be true. I do not want to be a diabetic. However being a student nurse, I knew that it was likely that it was.

I was seen by a Registrar and started on Intravenous Insulin on a Sliding Scale. This caused me to go hypo. My BM was 2 mmol/l, 0 mmol/l and I would have been dead. It felt like I was dieing, like my life was being drained out of me and there was nothing I could do. It started with stomach ache and the shakes and progressed to me going clammy and not being able to move. Thankfully the nurse discontinued the Intravenous Insulin and went to get me a cup of tea with a sugar.

I was moved to a ward at about 02:30am and greeted by a male nurse (just nice to see a fellow male nurse). As you can imagine I didn’t sleep one bit with the noises and unfamiliarity of the environment. The nurse had to come in every 2 hours to do my BM and I was constantly up at the toilet what seemed like every 5 minuets.

Glossary
BM (Blood Measure) is a measurement of gluecose (sugar) levels in the blood. Before eating it should be 4-7 mmol/l. Two hours after eating it should be below 9 mmol/l.
Hypo / Hypoglycaemia is low glucose (sugar) in the blood, on a BM anything below 4 mmol/l is classed as Hypoglycaemia.
Insulin is a hormone produced by the pancreas which allows cells in the body to absorb the glucose.
Intravenous a route of giving drugs/fluids straight in to the vein.
SHO (Senior House Officer) is a middle grade doctor.
Sliding Scale is when a drug is started on a dose and depending upon your bodies reaction the drug is increased or decreased. E.g. if your BM had gone from 14 mmol/l to 20 mmol/l the insulin would be increased.
Registrar is high grade doctor.

I remember when I finally got discharged from hospital, I went home and started running a bath. While the bath was running, I sat on the floor with my knees up to my chest and cried. It was the first time I was really able to express how I felt about my diagnosis. I am of course three years on much more tolerant of my diabetes. So why share the story?

I felt alone when I was diagnosed and that there was no psychological support. So I guess I’ve shared the story to let others who are newly diagnosed this message:

You are not alone. Others have experienced how you currently feel. It gets better with time. You adjust and adapt.

Take care,

Antony

A while ago I blogged about Hope for a cure for Type 1 Diabetes. I had some positive comments from readers (thanks guys & galls).

I recieved a response from the email I sent to The Faustman Lab at Massachusetts General Hospital it read:

“Hi Antony,

I apologize for the delay in response, our clinical research coordinator has been on medical leave for the past month. Unfortunately, we do not keep track of or comment on other trials. Thank you for your interest and please let me know if there is anything else I can do for you!

Take care,
Rabia Malik”
(From: Email, Recieved: 13th October 09)

I doubt they don’t keep track of other clinical research trials, more likely with the litigation in America they are unwilling to recommend a trial incase it goes wrong and I take them to court. What I liked about their trial is that they are dealing with the cause not the symptoms of the disease.

So I did a Google search to establish the cost of diabetes for the NHS and found this article from The Guardian: Diabetes costs NHS £1m an hour, charity says. Now wereas it includes Type 1 diabetes (my type) and Type 2 they are often bunched together by the media. According to the article:

The total cost to the NHS equates to £9bn-a-year.
(From: http://www.guardian.co.uk/society/2008/oct/08/nhs.diabetes, Last accessed: 14th November 09)

So with this in mind, it makes financial sense for the Government to commision research in to a cure for diabetes. So I’ve set up a peitition at No. 10 Downing Street, please go to: http://petitions.number10.gov.uk/diabetescure/ and sign it.

Many thanks & hugs,

Antony

In the News a few weeks ago (see BBC News – Nursing to become graduate entry) it was announced that Nurses from 2013 will only be able to train at Degree level. I have mixed feelings about this.

I am proud to be a Nurse. I orignally trained as a Diploma student purely for financial reasons. In doing the Diploma the NHS paid all of my tutition fees and gave me a small monthly bursary. If this had not been on offer it would have not been financially viable for me to train. My fellow Diploma students were mostly in their late twenties or early thirties and had young families, the tutition fees and the small bursery enabled them to train. These mature students all reported that they wouldn’t have been able to afforded financially to do the Degree course as they would have had to pay all their own tutition fees and recieved no bursary. My fellow students I saw on the wards and found them to be caring and ultimately became very knowledgeable competent Nurses.

Social Work is a graduate only profession, meaning that all Social Workers trained after a certain point are degree qualified. Making Nursing a degree level profession adds credability to the profession, increases Nurses knowledge and overall will enhance patient care. Indeed I have recently gone back to University to upgrade my Diploma to a Degree (see Back to University). All Nurses would agree that enhancing patient care is always a positive thing. So there are lots of positives to making Nursing a degree level profession.

My fear is that people don’t always go in to Nursing as their first profession (i.e. straight from school / college) such as my forma colleagues who were mature students who struggle financially. And even some people who are not mature students such as myself couldn’t have afforded to go in to Nursing if it was a Degree only profession. Therefore we potentially could miss out on some people who have the potential to be good Nurses (i.e. have a caring nature, a desire to make a difference, etc.). So my message to the Nursing and Midwifery Council, the NHS, the educational institutions and the government is:
Continue to make Nurse training financially viable for people from all walks of life regardless of: gender, sexuality, race, religion & disability.

Take Care,

Antony

I have come across hope for a cure for Type 1 Diabetes. Below is a rather lenghtly video interviewing Dr. Faustman (from The Faustman Lab at Massachusetts General Hospital).

Interview: Type 1 Diabetes Cure Trial from David Edelman on Vimeo.

(Video from: http://www.diabetesdaily.com/edelman/2008/09/diabetes-cure.php, last accessed: 13th September 09)

I learned a lot watching this video about diabetes, the history of research and current thinking. It sounds good to me. The problem is that the clinical trials won’t be funded by the big drug companies as the drug proposed to be used for the cure are a generic drug, a one off dose. Rather than for creating a new drug that people will need to manage the condition (continous treatment).

Big drug companies don’t want to fund for a cure as they’ll make more money out of continous treatment. How wrong is that? I have emailed The Faustman Lab at Massachusetts General Hospital) with this email:

“Hi,

Antony Simpson”

I really want to do something to raise funds for this research. Will have to have a think and come up with some rather imaginitive ideas of raising money. Now I never ask for any money off anyone, but if you think this is a good cause and want to give a £1, you can do so on their website: The Faustman Lab at Massachusetts General Hospital.

Let you know how I get on with my fund raising ideas,

Antony x

‘They have given me my life back’

By Jane Elliott
Health reporter, BBC News

When Gareth Roberts has a sugary drink and a couple of chocolate bars his blood sugar levels soar.

But within hours they are back to normal.

For Gareth, aged 32 from Blackpool, this is a revelation.

At the age of just 10 weeks he was diagnosed with neonatal diabetes and until recently he had to carefully watch what he ate and needed to inject himself with insulin four times a day.

Wonder drug

Then doctors diagnosed him with a gene mutation, and he was weaned off insulin and on to tablets that are specially suited for his type of diabetes.

He is delighted with the results.

“ They said it was a complete shot in the dark and might not affect me, but that if it did it would transform my life ”
Gareth Roberts
“After the test result came back positive I was able to come off insulin and go on to tablets,” he said.

“Even after eating all the wrong kind of food my blood sugar levels went back to normal without needing any insulin.

“I can eat anything now, but my doctor did warn me to take care and to remember I still had diabetes.”

Gareth said diabetes had dominated his life.

“Because I was diagnosed so young I didn’t know anything different,” he said.

“But it was terrible on insulin – swinging between too low and too high blood sugars.

“I tried to keep a balance, but my blood sugars were always up and down.”

Then, two years ago doctors tried him on the tablets.

Mutated gene

About one in 100,000 babies are born with neonatal diabetes each year. The condition is diagnosed in the first six months of life.

The standard treatment – regular injections of insulin – helps to control their blood sugar levels to a degree, but cannot prevent fluctuations.

The breakthrough came from a team of scientists at the Peninsula Medical School in Exeter.

Using DNA testing, they showed that about half of the children with this condition had a mutation in a key gene which prevented them from releasing insulin in response to a rise in blood sugar levels.

They also found a potential answer: a group of drugs called sulphonylureas, which are already used to treat people with type 2, or adult onset, diabetes.

Sulphonylureas help people with neonatal diabetes to release insulin from their own pancreas.

Meeting families

Two researchers – Professor Andrew Hattersley, from Peninsula and Professor Frances Ashcroft, of the University of Oxford – who played a leading role in the discovery recently held a meeting of parents, patients, doctors and scientists.

Professor Ashcroft said it had been exciting for the scientists to see the effect the drug had on patients.

“It was a wonderful day. As a scientist working on a human disease, you hope that your work will help patients one day,” she said.

“But you never expect that it will have an impact in your own lifetime, and you certainly never expect to meet people whose lives have been helped by it.

“To have some one say ‘You have transformed my life’ is extraordinary”.

Professor Hattersley said the new treatment really had transformed patients’ lives.

“As soon as the problem was discovered, patients can be given the drugs,” he said.

Neonatal diabetes
Neonatal diabetes is diagnosed in the first six months of life
It affects one in 100,000 babies
Although neonatal diabetes produces no insulin it is different from the more common type 1
“This has had a fantastic effect because their blood sugar levels are very much more stable.

“Gareth was struggling with diabetes and trying to balance things with insulin – his life has now changed dramatically.

“The key message we have been getting out to doctors and patients is that anyone diagnosed with diabetes under six months should have genetic testing.

“This treatment does not work in patients who do not have the genetic change.”

‘My life back’

Gareth said the Exeter and Oxford teams have given him back his life.

He initially got a letter from his local hospital in Blackpool, inviting him to give a blood sample.

“They said it was a complete shot in the dark and might not affect me, but that if it did it would transform my life.

“And it has. Within six weeks of taking these tablets I had stopped taking insulin.

“Now I have no insulin at all, which is such a relief.

“At the time I was having four injections a day and you have to keep on taking the blood sugars, but since I have been on the tablets it has been great.

“I take one in the morning and one at night but I am not tied to when I take them. Every time I take a blood test now it is normal.”
(from: BBC News – Health, Last Accessed: 31st August 09)

I think this is wonderful to read. They simply need to get working on a cure or drug to better manage sugar levels for Type 1 diabetes (my type).

Keeping an eye on developments,

Antony