Type 1 diabetes patient and postdoctoral research fellow, Thea de Gruchy, shares why she chose to become a Diabetes South Africa volunteer.

Diagnosis

I was diagnosed with Type 1 diabetes on 26 December 1999. While the rest of the world was waiting to see what Y2K would mean for computers and alarm clocks, my family was anxiously trying to figure out how to adapt to life with a diabetic eight-year-old. My prevailing memory from this time was looking intently at the front pocket of my doctor’s coat, knowing that there was a lollipop in there and not quite understanding why I wasn’t getting it.

Interesting experiences

Since being diagnosed, I’ve had a lot of experiences that I’m sure people with diabetes all over the world share. The insulin pump rep who took the battery out of my pump even after I told her that whenever I took the battery out the whole pump resets, and who was then surprised when the whole pump reset.

The new GP I went to for a throat infection who told me my HbA1C wasn’t good enough, and then admitted that he hadn’t seen a patient with diabetes since the 90s.

The friend of a friend who told me not to eat a very delicious looking piece of cake at a birthday party. The barrage of messages every time there’s a newspaper article that talks about a ‘cure’ for Type 1 diabetes.

Limited access of care

Although I don’t believe the ‘there will be a cure in five years narrative’, I do feel incredibly lucky to be diabetic at a point in history where there are sufficient pharmacological and technological developments that enable me to live and enjoy a good quality of life. But I also know that although insulin has been around for 100 years, access to it, and other life-saving and life-improving tech and medicine, is limited to just a few of us.

Barriers to healthcare, in addition to the narratives around ‘deservingness’ that often permeate conversations about diabetes and terms like ‘co-morbidity’ or ‘underlying health conditions’ that have served to explain away the deaths of people with diabetes during the pandemic, are all completely unacceptable, but all completely accepted as part of how society operates and thinks about illness.

Pandemic has made me feel ‘diabetic’

Reflecting on her experiences with cancer, Susan Sontag famously wrote, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Sontag, Illness as metaphor, 2002)

I’ve just turned thirty. So, I’ve now lived in the ‘kingdom of the sick’ for a lot longer than I ever lived in the ‘kingdom of the well.’ For most of my life, however, I’ve always understood myself as being well or healthy, just having diabetes. It’s only been more recently that I’ve started to understand that I don’t just live with diabetes as an added extra (another item on my to do list). But rather that diabetes is all-encompassing; an integral part of my life that affects everything I do, and which is affected by everything I do. Trying to get through the last two years of the pandemic has definitely made me feel diabetic in a way that nothing has before.

Offering help to DSA

This feeling prompted me to reach out to Diabetes South Africa (DSA) in early 2021 and ask if I could be of assistance in anyway. I reckoned that if I was feeling isolated and frustrated, others would be to, and I wanted to know if there was anything I could do.

People living with chronic illnesses, specifically diabetes, are often referred to as ‘patient experts’ in recognition of the amount of expertise and agency that goes into living with a chronic disease on a day-to-day basis. I was interested to know if there was anything I could do as both a patient expert and someone with professional expertise in understanding barriers to healthcare in South Africa. And I’m so glad that I did. I’m learning so much about diabetes and people living with diabetes in South Africa and supporting an organisation like DSA feels increasingly important in the current context.

Acceptance

Living with diabetes has definitely become a more important part of my identity as I’ve grown up. Learning to accept that diabetes does in fact define me and does create limitations has been an important step is figuring out how to live the life I want to and do the things I want to do with diabetes. Except for eating pizza. I gave up on that fight a long time ago.

Instead of seeing the things I do as a person with diabetes as a chore, I try (although not always successfully I must add) to see opting out of pizza, needing extra sleep or extra time to recover from a run, ensuring I always have extra meals in the freezer as reminders that “The fight is still going on, and I am still a part of it.” (Lorde, Cancer Journals, 2020).

Noy Pullen educates us on Jin Shin Jyutsu and how it achieves harmony in your hand.

Ever really looked at your hands? The soft generous palm with four distinct fingers raying out: the pointer or index finger traditionally shows the way. It’s also known as the teacher, the prayer finger or even the pot-licker.

The expressive and powerful middle finger, or tall poplar, is often employed to gesture anger.

According to medieval belief, either a nerve or artery connected the ring finger to the heart which gave the finger a prominent role in medical practice. Doctors would use the ring finger when applying treatments. As a make-up artist, I have always done this unconsciously when applying any cream. Similarly, when applying any ointment to my family’s wounds. Our beauty therapy trainer said that it was the most delicate finger and would not pull the skin. This finger is called doctor finger, healing finger and heart finger. Because of its healing and pious reputation, our gentle ring finger is also known as the finger that no-one dares speak its name.

The amusing pinkie, so called for its diminutive size and because pink means ‘small’ in Dutch. This finger also bears the titles of youngest daughter or ear-finger for its ability to remove wax from the ear.

The dexterous opposable thumb gets its name from the word, tum, meaning swollen, being thicker, stronger and shorter (with only two joints instead of three) than the fingers. It’s also referred to as chief finger or grandfather, or even lice finger for obvious reasons.

The fingers are recognised for their roles in praying, hunting, healing, cursing, licking pots, and squashing pests.¹ Our hands create the most beautiful works of art, a flourishing vegetable garden, a superb meal or they can soothe and comfort one in distress.

Harmony in your hand

We also shake hands, press our hands together or clap hands for communicating, for worship or contemplation, or cogitating walking slowly with hands clasped behind the back. We hold hands, interlock or press together for prayer, or even pressing down on the earth. Enjoying a relaxing head massage, both you and the one doing the massage, benefit from this gentle acupressure of the fingers.

Managing a difficult diagnosis

My integrative medical doctor, while discussing a serious diagnosis and the accompanying feelings with me demonstrated a simple yet effective technique called Jin Shin Jyutsu to practice when those debilitating companions – worry, fear, anger, sadness or apathy – threaten to overwhelm me. Everyone who has some difficult or tragic news has met these feelings.

Jin Shin Jyutsu (pronounced Jin Shin Jitsu)

This ancient healing art from Japan, Jin (meaning man of knowing and compassion) Shin (creator) Jyutsu (Art), translated into English might translate as The Creative Art of Harmony.

The idea is to hold each finger with all the fingers of the other hand wrapped gently around that finger for a few minutes until you feel a gentle pulse, breathing deeply. Repeat with each finger then to complete the process, press the palm of the hand with the thumb while supporting that palm with the other fingers. Repeat for the opposite hand.

This brings a sense of well-being to the whole body. You may wish to focus on one emotion. For example, fear, if it’s the over-riding emotion, wrapping and holding the appropriate finger till you feel the pulse together with the positive energy, peace of mind, in this case, washing over you. Repeat on the other hand.

Some practitioners take only the tip of the finger gently squeezed by the index finger and thumb of the other hand, ‘dripping’ the negative energy downwards towards the ground so it can ‘run out.’

The main dis-ease which focuses on each finger meridian

• Thumb (earth) – worry (also stress, tension, headaches)
• Index finger (water) – fear (addictions, back pain)
• Middle finger (wood) – anger (impatience, indecision)
• Ring finger (air) – sadness (grief depression, asthma)
• Pinkie (fire) – low self-esteem (overwhelmed, anxiety, criticism)

Organs associated with each finger

Thumb – stomach, spleen, skin
Index finger – kidney, bladder, digestion
Middle finger – gall bladder, liver, blood
Ring finger – lung, large intestines
Pinkie – heart, small intestine, bone
Palm – diaphragm is a special harmonising point

A positive response is released after holding each finger:

Thumb – trust
Index finger – peace of mind
Middle finger – joy
Ring finger – comfort
Pinkie – truth
Palm – for nourishment and intuition

This gentle form of acupressure develops an awareness of the life force (energy body) within yourself and can bring harmony to your body and mind, also calming the spirit. Your hands can perform this healing art by addressing physical symptoms or latent emotions that could be hindering your own sense of well-being.

How to get your own Jin Shin Jyutsu vinyl mat

Agents for Change has developed a beautiful vinyl mat that you could paste up on a wall for easy access, or as a placemat or mousepad, to remind you of this valuable accessible method of creating harmony. Mine goes in my bathroom door as a regular reminder of how wisely we are created.

For your very own Jin Shin Jyutsu mat/s, contact Linoia Pullen 0722587132 linoia@mweb.co.za for any orders.

References

1 https://www.tbsnews.net/offbeat/confusable-quintet-names-5-fingers-and-their-origins

2 https://www.youtube.com/watch?v=twFjKXU79Go

Please contact Noy Pullen if you would like more information: linoia@web.co.za or 072 258 7132.

AGENTS FOR CHANGE IS A DIABETES SOUTH AFRICA PROJECT MANAGED BY NOY PULLEN.

Jeannie Berg, pharmacist and diabetes nurse educator, offers good practical tips on how to manage your medical aid.

Healthcare has become hugely expensive. Even a minor operation can have you digging into your long-term savings. The high cost of hospital stays, specialist fees and other medical expenses (including medication) makes it important to have at least some form of medical cover: medical aid or medical insurance.

Let’s start off by differentiating between medical aid and medical insurance. Although, these terms are often used interchangeably, there are significant differences between them.

Medical aid

A medical aid scheme focusses on providing members with cover for expenses associated with necessary medical treatment. Members are often obliged to use healthcare specialists who belong to a provider’s network, and conditions rule which treatments are covered, but taking scheme tariffs into account, the amount you’re paid out will depend on what medical attention you need.

Medical insurance

Medical insurance, however, is intended to ensure that when you need funds for medical purposes, you receive a fixed lump sum. This amount won’t differ, regardless of the type of treatment that’s required or which healthcare providers you use. Here you would pay the health providers up front and the insurance will give you the agreed upon lump sum and you have to sort it out.

Governed strictly in SA

Both medical aid and medical insurances are governed very strictly in South Africa. All medical aid schemes are regulated by the Medical Schemes Act and governed by the Council for Medical Schemes. Medical insurance is regulated by the long-term insurance act and governed by the Financial Services Board.

By law, medical aid providers are required to provide prescribed minimum benefits (PMB) for a list of chronic disorders, such as asthma, cardiac conditions, diabetes, hypertension, etc. There are 26 conditions that are covered.

However, medical aids still decide what drugs are on their ‘essential drug list’ for a certain condition. If you use a drug for a condition that is not on this list, chances are that you might have to pay in full for it, or a bigger co-payment is required.

So, how do you manage your medical aid?

• It’s like a bank account. You have a certain amount of “money” in it and you need to take care that you don’t waste it. You need to check all the claims that go through it.
• Use your options carefully. Do you need to see a doctor, or can a pharmacist help you? Pharmacists are highly trained and many have done courses on primary healthcare. This means that they are able to help you with OTC medicine for conditions like sinus, colds and pain, without you having to see a doctor and use your doctor visits unnecessarily. Pharmacists are drug specialists. Many drugs have generic alternatives and are often priced at a fraction of the cost. Usually, medical schemes will pay in full for generic options. Generic medicine has the same active ingredient as the original brand, and should be just as effective with the same strength and dosage. Your pharmacist can guide you for the best generic options, especially if you are on chronic medication. If you do still insist on the original drug, you will have to pay some or all of it.
• Gap cover is a good idea if you have any worries about potential co-payments. This cover could help avoid costly out-of-pocket in-hospital medical fees. Gap health insurance works with your medical plan to close in-hospital payment gaps if your medical aid benefits are exhausted. Some medical aids also offer Gap cover. It’s worthwhile looking into this.
• Managed Care Benefits are offered by medical aids and it’s a good thing to look into this. These programmes typically help those who need to manage chronic conditions, such as diabetes, cancer, and HIV/AIDS. They are usually funded by your medical contribution’s risk portion and not from your savings account, meaning that you are getting the most from your benefits while receiving the medical care that you need.
• Always ask questions. You are the client/patient and entitled to ask what you are unsure of.
• If you need to be hospitalised for a routine procedure, ensure that the hospital and doctors are on your medical scheme list.
• Ask your doctor or specialist how much they will charge and ask them to explain the bill in terms of your medical aid coverage. If your medical aid doesn’t cover enough of the doctor’s fee, ask him if he would be willing to negotiate a lower rate.
• Ensure that you have obtained the necessary pre-authorisation for procedures and that the correct ICD-10 codes are being used.
• Remember that you’re the owner of your medical aid “bank account”. Use it wisely. Check your statements to make sure that your funds are being well spent by yourself and your beneficiaries.
• Don’t buy OTC medicine unnecessary, because your medical aid pays for it. Remember that when medical aids budget for the following year, they also take into consideration the spending trend of the patients. This affects your following year’s contribution.
• Don’t do someone a favour by buying something on your medical aid. This is fraud and can get you into serious trouble.
• The best you can do for yourself is to have a good medical aid that is right for your style of living. If you have many chronic complications, you need a more comprehensive plan. If you are young and healthy, you can opt for a lower plan. All plans include a hospital plan.

Looking after your health by having a good lifestyle, which includes healthy eating, stress management and exercise is already a great way to save on medical expenses.

Header image by Adobe Stock

Dr Louise Johnson, a diabetes specialist, clarifies what Maturity Onset Diabetes in the Young (MODY) is.

MODY was first recognised in 1974 as mild familial diabetes with a dominant inheritance. This form of diabetes can be confused with either Type 1 or Type 2 diabetes.

 The criteria for suspecting MODY are:

• Diabetes before the onset of 25 years of age
• Absence of autoantibodies against the Beta cells (also called GAD antibodies and are present in Type 1 diabetes and Latent Autoimmune Diabetes in Adult (LADA))
• Presence of diabetes in two consecutive generations of your family.
• C-peptide of more than 200 pmol/L (this indicates the presence of beta-cell function of the pancreas) even after three years of insulin treatment.¹

To date, 14 different gene mutations are recognised in MODY. MODY is a rare condition accounting for 1-5% of all cases of diabetes and 1-6% of paediatric cases of diabetes.

Approximately 80% of patients with MODY may be misdiagnosed with Type 1 or Type 2 diabetes at diagnosis and current calculations indicate a delay of approximately 15 years from diagnosis of diabetes to the genetic diagnosis of MODY.²

Diagnosis of MODY

At diagnosis, MODY can’t be distinguished easily from Type 1 or Type 2 diabetes based on clinical characteristics. Rather, Type 1 diabetes mostly differs from MODY in terms of disease aetiology. In Type 1 diabetes, the cause is autoantibodies, called GAD antibodies, against the beta cell of the pancreas.

Patients with MODY usually maintain beta-cell function. This can be demonstrated by doing a blood sample and measuring C-peptide. In MODY this value is above 200 pmol/L. Their diabetes is well-controlled with no or low dose insulin for at least five years after diagnosis.

The clinical manifestation of Youth Onset Type 2 diabetes clinically resembles MODY but Type 2 diabetes patients are obese. Patients with MODY may become obese due to poor diet habits and lack of exercise but are usually lean. Both Type 2 diabetes and MODY patients have a strong family history. To detect MODY, genetic testing should be done.

Candidates for genetic testing

• Non-obese person with abnormal glucose.
• No autoantibodies against the beta-cell of the pancreas.
• Preservation of beta-cell function as shown by a C-peptide of more than 200pmol/L.
• Strong history of the same type of diabetes in first-degree relative (mother or father).

However genetic testing remains expensive and is limited to cases of strong suspicion of MODY.

MODY subtypes

There are at least 14 different MODY subtypes reported. However, there are six major subtypes, as discussed below. MODY subtype determination is important as the subtypes differ in terms of age of onset of diabetes, clinical course and progression, and response to treatment.

• MODY 1(HNF 4 alpha MODY)

This group has a progressive decline of beta-cell function. They present in adolescence. These patients also have increased triglycerides (blood fat content).

• MODY 2 (GCK -MODY)

This mutation increases the glucose threshold for insulin secretion and thus results in increased fasting glucose values. These patients are asymptomatic, and the majority are discovered during pregnancy through a routine glucose evaluation. MODY is present in 2-6% of gestational diabetes. The clinical course of this subtype may be mild and non-progressive, and complications are rare.

• MODY 3 (HNF1 Alpha MODY)

This mutation causes a progressive insulin deficiency that manifest as mild hyperglycaemia in childhood and early adulthood. In this group, the risk of complications is similar to Type 1 or Type 2 diabetes.

• MODY 4 (PDX-MODY)

These patients have neonatal diabetes. This is very rare.

• MODY 5 (HNF 1 beta MODY)

This presents in children with abnormal glucose and abnormality of the kidney and urinary tract to the bladder. These patients will develop kidney failure by 45 years of age. This should be suspected in diabetes with non-diabetic kidney disease. They develop insulin deficiency early in their disease progression.

• MODY 6 (NEURODI-MODY)

This can cause neonatal diabetes or childhood diabetes with associated neurological manifestations and learning difficulties.

How can MODY be diagnosed correctly?

The clinical characteristics of:

• Diagnosed before 25 years of age.
• Presence of diabetes in two consecutive family generations.
• Absence of beta-cell autoantibodies.
• Preserved insulin secretion as demonstrated by a C-peptide of more than 200 pmol/L.
• Not obese.
• Not prone to ketones.

Treatment of MODY

Children and adolescent diagnosed with diabetes will initially be treated with insulin. After glucose is stabilised, an evaluation can be done to exclude MODY by applying the above-mentioned criteria.

MODY 2 can be treated by diet and oral antidiabetic tablets.

MODY 3 needs to be treated with oral diabetic tablets, such as gliclazide or glimepiride. The newer class drug GLP1 agonists (liraglutide) have also been approved.

MODY 5 patients need intensive insulin treatment to control glucose.

Remember MODY should be suspected in the presence of mild to moderate hyperglycaemia without ketones in the presence of a non-obese individual with a strong family history of diabetes.

References

1. Ellard S, Ballane-Chantelot C et. al. Best practice guidelines for the molecular genetic diagnosis of maturity onset diabetes of the young. Diabetologia.2008; 51:546-553

2. Shields BM, Hicks S et. al.Maturity onset diabetes of the young (MODY): how many cases are we missing? Diabetologia.2010;53:2504-2508

Header image by Adobe Stock