Our Bodies and Insulin

As of late, I have been working a lot. Admittedly, this blog has suffered!

Another challenge I faced recently was excruciatingly bad sugars. It was horrendous and frightening. I am a “mum” and I manage a staff at work and I just felt like things were falling apart.

It all started with a little problem that I have had for 5 or so years now called Diabetic Hand Syndrome. Twice a year I receive steroid injections for pain management. My sugars tend to rise a little after the injection, but it is manageable. This time my sugar went up to 27 mmol (multiply by 18 to get mgdl!) It took me six hours to get it down. But things didn’t get better – they were getting consistently worse. My sugars varied from 17 mmol to 13 mmol over a succession of days. 10 was looking pretty good. I was starving myself for better sugars but nothing was working.

Finally I got to see my doctor. My A1c was not affected, but together we couldn’t figure out what was going on with me. Was it purely hormonal – did I have an over-active liver?

I asked my doctor to look at my pump injection sites – sure enough this was the problem. I am suffering from Lipohypertrophy. Here is what my doctor told me:

Lipohypertrophy (which is common and due to fat build up) occurs with all insulins, including aspart and lispro because it is due to the action of insulin on the fat cells. There is no difference between lispro and aspart in this respect. Most people have some degree of liohypertrophy at some stage in their diabetic career, whether on injections or the pump, by the way.

It isn’t that bad on me – in fact hardly noticeable on my stomach area. But there are these little globulars of fat storage sites which I can detect (and I am quite thin.) Hopefully, they will disapear in 6 months or so. I now must use the sites on my lower back or sides, upper legs or even arms! Talk about a human pin cushion!

Things improved in 24 hours. And my trust in my doctor is stronger than ever.

Diabetes Plague?

In keeping up with my interest in the NY City Department of Health’s policy for diabetes survelliance and evaluation for diabetes patients diagnosed and seeking medical care in all the NYC Boroughs, I saw this editorial tonight and thought I would post it. (The original article I posted was on 20 December 2005.) The author of the editorial, Dr. Gerald Bernstein appears to be dedicated to the care of many patients with T2 diabetes and with one quick review of his biography, we can easily comprehend how deep his commitment to diabetes research and furthering diabetes advances in mainstream healthcare. Is his concordance with NYC DoH a reflection of his frustration in dealing with so many poorly cared patients?

Dr. Bernstein even compares diabetes to the plague…seems very extreme, but is it? In modern terminology the word plague is used to describe any epidemic disease with a high death rate which is usually also highly infectious. The Plague specifically refers to the bubonic plague, a disease carried by rats and spread by fleas which killed a third of all humans in medieval Europe.

I think his tone is a bird’s eye view into what it must be like for a diabetologist or an endocrinologist in the US – and what he sees everyday. I know that just sitting in any diabetes clinic for one hour is like being in a war zone with bandaged (sometimes bleeding) legs, immobile people in their 40’s, 50’s and 60’s …, bandaged eyes, people without limbs and finally, tears and frustration. I see the eyes of these patients looking at me – a relatively young woman who looks healthy. Their eyes look right through me begging for understanding and solutions. I am not being dramatic…the emotions are palpable. The faces of diabetes are (often) heart-breaking.

I return home from my quarterly appointment feeling raw from seeing so much pain and suffering for a disease that strikes so quietly yet so insidiously with many serious and horrendous complications! What will be the result of all this media attention? Will all diabetes patients finally have the opportunity to receive the education and care they require?

What’s Diabetes Like When…

Today, a colleague who has pharmaceutical marketing experience in diabetes care, asked me a number of legitimate questions about diabetes. One of them was,

“Is it really hard taking injections in front of people? Because many people use this as a reason for not wanting to inject.”

When I was a child and teenager, it definitely had to do with shame. Not so long ago, I remember being in situations (not usually with family or with close friends) when I would give myself a time limit for taking an injection if I felt uncomfortable in front of a particular group i.e., acquaintances, new social group, colleagues, clients etc. Usually it had to do with proximity and privacy when sitting at a dinner table – especially in smart New York bistros. I often worried about other people’s comfort levels more than my own. Before fast acting analogs, in my mind it really went like this…

“OK, entree will arrive in 30 minutes, must excuse myself to bathroom now or I am doomed.”

Today, I just don’t worry. Perhaps it is because we are used to technological gadgets like mobile phones, blackberry devices, ipod et al. And just like anyone who may turn off their phone, check a message or collapse their ipod earplugs to have a conversation, I have no qualms about whipping out my pump or setting my glucose meter on my lap, and performing a quickie blood test and basal in less than 10 seconds. It is just that simple. (Of course the other reason may be that I have had this illness for far too long!)

I think we have come a long way. The complacency factor, however, is a very different story.

More next time.

What Comes First? Diabetes or Socio-economic Class?

The article below and linked discusses the relationship between chronic illness and low-er economic status or as it is called in the article “material deprivation.”

“Researchers in London have identified a link between increased hospital admission rates for chronic diseases and high levels of material deprivation in the capital. The research published in this month’s Journal of the Royal Society of Medicine, shows how admission rates for chronic diseases such as asthma and diabetes are linked to the level of material deprivation in the surrounding area, and not to poor care by GPs serving them.”


More importantly it also illustrates that high admission rates for chronic diseases may not be down to poor primary care. If a PCT is in a materially deprived area, higher admission rates for chronic diseases could be inevitable.”

(PCT’s are NHS organisations which focus on managing the health of a local population.)

Interesting. Not sure what the Royal Society of Medicine is aiming for here. It is the chicken and egg dilemma. Which comes first? Education and preventative care or large, poor diabetic population?

Are you a High Functioning Diabetic?

The other day I had lunch with a woman who was recently diagnosed with Type 1 diabetes. We both live in London, and are both from the U.S. (she from Minnesota, and me from New York City), and so, we could hardly contain ourselves in sharing information. We discussed managing diabetes in Europe, and the pros and the cons of having to deal with a major illness abroad. Then, she asked me:

“Do you think you are what they call a high functioning diabetic?”

I had to laugh, but it was a very innocent question. I wondered if this was something that doctors in the U.S. discussed with their patients. It occurred to me that my new friend as a very senior professional had discussed her life with her health care teams, and they defined her as a very high functioning person — now with diabetes. Now, she would have to become a high functioning diabetic.

Which leads me to two questions.

1. Are we defined by our disease? With diagnosis, does our diabetes over-ride (trump) being called a man, woman or child? Does Diabetic become our definition?

2. What is a high functioning diabetic…anyway?

High functioning is a term used to describe people with disabilities such as autism or neurological disorders. This is astounding! I get the sense that the Healthcare community has organically decided to utilize this term for diabetics without any consensus. There is such a thing as a person who has adapted well and a person who has not. Let’s call it…..a diabetes compatibility factor™.

The ability to consistently co-exist with or be tolerant of diabetes.

For me, a high compatibility factor™ is the ability to plan and manage life goals in the same manner with or without diabetes. Obviously, knowledge and fate are going have an impact on this. I work in healthcare communications because I believe working on ways to improve doctor and patient information AND communication deserves my energy. I am committed to it. I am certain, having diabetes as a child had a great impact on why I chose this. Perhaps if I had been diagnosed later in life, I would have chosen another field, but with the same degree of commitment and dedication. It is just who I am. Diabetes doesn’t change that.

The second greatest factor is the ability to accept the fact that having diabetes means accepting not always having control. For me this is KEY. I have learned not to get angry or upset if my numbers are off…either low or high. I have learned that accepting the good with the bad, and not berating myself, doctors or the world for my predicament has made me a happier person.

Where are the Great Diabetes PSA’s?

I live in London, which means I did not have the opportunity to see the SuperBowl or the advertising. (For all Europeans out there (who probably would NEVER watch American Football) the SuperBowl is the grand-daddy of all games and advertisers pay vast sums of money to air because ga-zillions of people are watching!

I did see this ad that Dove Soap produced. Dove has created a fund dedicated to helping girls with issues related to self-esteem called Uniquely Me.

I like it. It is a worthwhile cause…

Why aren’t similiar sized corporations of diabetes products/services doing something like this? Would it be worthwhile to show the different faces of diabetes and all the patients that are heroically trying to sustain control and management? Why not an inspirational campaign both for research, awareness and greater understanding? Why do diabetes campaigns always have to show images of death, amputation, pain, and desperation?

Are the marketers out there listening?

The Challenge of Diabetes in Africa

Today, I am introducing David Beran, Project Coordinator for the International Insulin Foundation. David Beran has been the Project Coordinator of the International Insulin Foundation since its establishment in 2002. He is a Swiss national who grew up in Geneva and holds a BSc in Management with an Emphasis in Marketing. He has worked for a leading Swiss Biotech Company in both Health Policy and Government Relations and in Public Relations. For his Masters’ dissertation at the London School of Hygiene and Tropical Medicine, David worked at the WHO looking at designing a model for preventing Type 2 diabetes in children.

I wrote to David a few weeks ago and asked him to write a piece on Africa and how people cope with diabetes there.

What Is the International Insulin Foundation?

In 1901 Dr. A. Cook, a medical Missionary wrote in his notes on diseases met in Africa “… diabetes is very uncommon but very fatal…” Over 100 years later I was hired by the newly established International Insulin Foundation (IIF) to accomplish its mission of “increasing access to insulin and diabetes care in the World’s poorest countries.” The IIF was established by Professor John S. Yudkin following an article he wrote in the Lancet in the year 2000 and is a registered Charity in the UK (www.access2insulin.org).

My first challenge, besides learning more about diabetes, was to find a way to develop a protocol that assessed the different levels of a given country’s health system. In essence the protocol studied two parallel paths:
– The path of insulin from its arrival in a given country until it reached/or failed to reach a given patient
– The path of care from its organisation at the Ministry of Health to when patients attended different facilities around the country.

This protocol has now been implemented in Mali, Mozambique and Zambia and the IIF has worked closely with the Ministries of Health, Diabetes Associations and local NGOs in these respective countries to improve the situation for people with diabetes.

Living with Diabetes in Developing Countries

From the moment I set foot on the African Continent what struck me was its people. After 3 years of working for the IIF and having spent 3-4 months in Mali, Mozambique and Zambia and visits to Tanzania I have had some amazing encounters, with unique people.

I have met dedicated doctors and nurses who spend many hours caring for their patients. One such nurse I met is now referred to as Mommy Diabetes. She cares for children at a special clinic, runs a camp for them and ensures that parents understand what diabetes is and especially that even though their child has diabetes it doesn’t mean they can’t live a normal life.

Another one of my encounters was with a 32-year-old journalist who had been diagnosed with diabetes 12 years earlier. He provided me amazing insight into what having diabetes in Africa was like. He was the first person with diabetes I got to know well and he made me realise that each patient had a story to tell. Before his diagnosis he had never heard of diabetes, and he thought he had malaria until the doctor he went to see checked his blood glucose. When we spoke about his condition he said he was lucky as well as he could read about diabetes on the Internet and in books, as he was literate and spoke English. The last time he went to see a doctor was 5 years ago as he put it, “I am fine. I don’t need to wait over an hour to see a doctor.” One evening we went out with some of his colleagues and they asked how we had met. I told them about my work and they were surprised to find out that their colleague had diabetes. They had no idea and asked him 100’s of questions about his condition.

Access to Healthcare – Access to Insulin

Accessing insulin and syringes was sometimes a problem for people with diabetes in sub-Saharan Africa. Insulin is not always available, for some its cost is a barrier and others have to travel far to be able to get it. Syringes are often not available in the public sector and people use their single use syringes more than once or until injections starts to hurt because of a blunt needle. Most people I met had no means of self-monitoring their blood glucose.

A young boy in a rural area had an amazing story to tell about his diagnosis. He was admitted to the hospital with suspicion of cerebral malaria. The first reflex healthcare workers have when they suspect cerebral malaria is to put the person on a glucose drip. This young boy told me how after the nurse had put the drip in he felt worse. No one did anything about it, so he tore out the drip and went crazy. A doctor then came in and asked what the problem was. When the boy described how he felt, the doctor tested his urine and found he had diabetes. Unfortunately, this boy is from a very poor family who is unable to afford his insulin and care. He receives support from a local diabetes association and one of the older members makes sure that he gets his insulin and talks to his family about the importance of caring for him.

Due to a lack of diagnostics and trained healthcare workers this scenario is all too frequent. Healthcare workers often told me, “We know what we see.” They see many patients with malaria and too few with Type 1 diabetes. They have received basic training in diabetes diagnosis and care, but lack of familiarity with the condition means that this training is often forgotten. This leads to many patients not being diagnosed, especially children.

Another experience that brings a smile to my face is when I attended the first camp organised for children with diabetes and the children were asked to make their requests to the diabetes association and government. They asked not to be forgotten and also that they wanted to create their own children’s association. The girl who delivered the speech was about 10 years old, but already a very convincing patient advocate. It was amazing to see these children learning about their diabetes and how to test their blood glucose. At the end of the camp they went swimming and became children again and not diabetics.

Inadequate Healthcare – and its Cost

The problem in the countries where I have worked is that diabetes is an expensive disease. Even though some aspects of care may be subsidised or free, there is still a cost to diabetes care, whether it is testing, insulin, transport or consultation fees. In Mali for example a patient in the capital city will spend approximately US$21.24 per month for diabetes care (US$255 per year). Half of this, about US$11, would be for one vial of 100 IU insulin. This in a country where the GDP per capita is about US$900.

The IIF believes that to tackle this problem the health system, as a whole needs to be improved. Donations of insulin and other punctual projects are beneficial in the short-run, but the IIF aims to find sustainable solutions to the problem of diabetes care and insulin access. This means working closely with local partners and improving local capacity based on a sound initial assessment with a clear set of recommendations that have been prioritised by local stakeholders.
I have only told a few stories about the patients I have met and interviewed for my work. For this work close to 100 patients have been interviewed and with many others I have had fascinating discussions. Each patient has told me a story, their story and the story of their diabetes. Some have made me laugh to tears and some have brought tears to my eyes.

Based on the IIF’s work, we have estimated that the life expectancy of a child in rural areas of sub-Saharan Africa can be as low as 7 months. Stories about people with diabetes and their suffering abound. However, I have decided to share the uplifting stories to highlight that diabetes in sub-Saharan Africa can be treated and people with diabetes can live normal lives even in the world’s poorest countries.

Diabetes ID: To Wear or Not to Wear?

The question isn’t should you wear or not; the question is do you choose to?

A special bracelet was made especially for me as a gift; only the charm has the medic alert insignia on it with diabetic written on the underside. It is so tiny, I have often wondered if a paramedic would even notice it given an emergency.

Decidedly, it is the minimum i.d. I could possibly wear. I also carry the diabetic identity cards in my wallet, which I believe could be very useful, unless I am found unconscious without my wallet — a very likely scenario!

As I began a new job today, and as I rushed to take my daughter to school and make it into Kensington on-time, it occured to me — why am I playing with fire? It is such a simple, practical issue. Why have I neglected this one fine, but critical point?

Am I too confident?

Hmmm…I think it is time that I considered the implications of not wearing an authentic diabetes ientification.

Here is a list of resources for those who are in a similiar state to me! I have heard Lauren’s Hope has great things (I would always choose items with a higher visiblity quotient at this point) and is reliable. Tip: โรคเบาหวานรักษาหายด้วย น้ำมันงาดำ