A Lacking Journey

A lacking JOURNEY

KALLMAN KALLMAN KALLMAN KALLMAN KALLMAN

Kallmann syndrome, also known as Kallmann’s syndrome, is a rare genetic disorder characterized by the combination of hypogonadotropic hypogo nadism (HH) and an impaired sense of smell or anosmia. It is named after the German endocrinologist Franz Josef Kallmann, who first described the condition in

While there is no cure for Kallmann syndrome, it can be managed with hor mone replacement therapy to address the hormonal deficiencies and improve the development of secondary sexual characteristics.

Full

name,

Hoe Hao Ming Nickson Geraldo

Age, 19

Occupation, Working at SANKYU as a Customer Service Representative under workstudy diploma in ITE

Nickson, my older brother, has a condition called Kallmann syndrome. He experiences anosmia, the complete loss of the sense of smell, as well as delayed puberty due to the hypogonadotropic hypogonadism (HH) associated with the condition.

During a school health check up, the doctors there had discovered that he had not started puberty at the age of 16. After a series of check ups at the Health Promotion Board, he was diagnosed with Kallmann syndrome.

While there is no cure for Kallmann syndrome, it can be managed with hormone replacement therapy to address the hormonal deficiencies and improve the development of secondary sexual characteristics. For males, hormone replacement therapy typically involves the administration of testosterone. Testosterone can be given in various forms, including injections, transdermal patches, gels, or pellets. The chosen method of administration depends on individual preferences, the severity of the hormone deficiency, and the healthcare provider’s recommendation.

Testosterone undecanoate soft gelatin capsules, commonly known by the brand name “Andriol,” are a form of hormone replacement therapy used to treat male hypogonadism, which is a condition where the testes do not produce enough testosterone. It is a form of hormone replacement therapy that helps to raise testosterone levels to within the normal range. These capsules contain testosterone undecanoate, a long-acting ester of testosterone.

Unlike many other testosterone medica tions that require intramuscular injec tions, testosterone undecanoate is taken orally in the form of soft gelatin cap sules. This makes it a convenient option for individuals who may prefer an alternative to injections.

It’s important to note that testosterone replacement therapy is generally not recommended for prepubertal males with Kallmann syndrome as they are still in the process of natural development, and hormone therapy could interfere with their normal growth and puberty. However, once they reach an appropriate age and stage of development, testosterone replacement therapy may be initiated under the guidance of an experienced endocrinologist.

My brother has to take this medication twice a day. The first few times he had always forgotten to take them, sometimes only taking it once and totally forgetting afterwards. As he was not used to having to take medication regularly, he was always distracted by school work or leisure activities and taking his medication was not on his mind. To solve this issue, my dad, who takes medication for his blood pressure reguarly, would remind him everyday to take his medication. This helped my brother create a routine and he slowly got used to taking his medication reguarly and on time.

Furthermore, my brother wasn’t a big fan of taking pills. He shared that he had always had a hard time swallowing pills and would always opt for a liquid alternative. Thus having to regularly swallow pills was a slight obstacle that he eventually overcame as time went by.

To add on, while this condition had caused his puberty to be delayed, which meant that he did not go through the same changes as his male friends did during the time period, he had always stayed positive and didn’t let this condition affect him or his self-esteem. My brother would frequently make jokes and see things in a positive way such as his lack of hormonal acne or the fact that he was taller than me although I had already gone through puberty. He has never let his condition get the better of him and feels that his condition doesn’t make a big difference in his life.

However with this condition, the price to be paid for the health check ups and medication was big. While my family wasn’t necessarily struggling financially, having to spend a big amount of money for his condition alone was intimidating.

My brother felt sad seeing our parents having to spend so much money on him, Although it was something he could not control, knowing our parents worked so hard to provide for us and him being the cause of more expenses, made him feel extremely guilty.

My parents shared that they would happily spend the money needed if it meant my brother was able to live normally like others. If really needed, Singapore has various options that could help them financially thus they assured my brother that there was no need to feel guilty. It was their duty as parents to do the very best for their kids and ensure that we are able to live happily,

Some worries my parents pointed out was if this condition would affect my brother’s ability to have kids in the future. However they have big hopes that modern medication would be able to solve this problem.

Hearing them say this, made my brother emotional which led to a very memorable family moment. I also felt very emotional having seen my family in such a vulnerable state.

Although my brother’s condition did not really affect my livelihood, I always try to be considerate of the amount of money I spend as I am a full-time student and still rely on my parents for pocket money. My brother has recently gotten his paycheck and has also started contributing to general expenses in order to help the family financially.

In my father’s words, “After all, it doesn’t matter if we are unable to have grandchildren. We can accept this, all that matters is that he lives happily.”

Moving on to my brother’s lack of smell, my parent’s had considered many options to cater to this condition. Some examples are, buying induction cookers and smoke detectors. They had worries that if a fire were to occur, my brother may take more time to notice which might put him in a more dangerous and vulnerable position.

Induction cookers have a significant safety advantage because they only heat the cookware and its contents, not the cooking surface itself. As a result, the cooktop remains relatively cool to the touch, reducing the risk of burns or accidental contact with a hot surface, which can be especially important for someone who cannot rely on their sense of smell to detect potential dangers or spills.

FOOD SMELL

When you have anosmia, the loss of the sense of smell can significantly impact the perception of food taste. The sense of smell and taste are closely interconnected, and together they contribute to our overall sensory experience of eating.

Flavor is a combination of taste and smell. The taste buds on our tongues detect basic taste sensations such as sweet, sour, salty, bitter, and umami (savory). However, the richness and complexity of flavors we associate with various foods come primarily from the sense of smell. When anosmia occurs, the ability to perceive these subtle aromatic compounds that give foods their characteristic flavors is diminished.

Without the influence of smell, taste sensations may feel blander or more limited. Basic tastes, like sweet and salty, might still be detected, but the full range of flavors becomes less pronounced and enjoyable.

Anosmia can make it challenging to distinguish between different foods that have similar textures but distinct flavors. For example, without the sense of smell, it may be more difficult to differentiate between the tastes of an apple and a pear.

As my brother had no sense of smell since he was born, he had never really fully experienced a proper taste journey. When I asked what his favourite food was, he answered that it was Borscht, a Russian pink broth with meat in it, usually made from tomatoes. However when asked how his favourite dish tasted, he visibly hesitated, eventually telling me he didn’t know how to describe it. After hearing this, I had a sudden sense of realisation, that the foods I taste did not taste the same to my brother. It made me think back on the instances where I had eaten with him and it made me curious as to how it felt like to be in his shoes, how his food tasted etc.

One story my brother had shared with me was during his secondary school days. He was studying Food & Nutrition, I felt that it was ironic seeing as how a sense of smell would naturally be important in order to study food and nutrition. However during that period, my brother had no idea that he had a loss of smell since it had been that way since he was born. He had assumed that everyone around him had the same sensory experience as him. He continued that during these classes, he always had troubles describing the taste of food they had made during class and would always refer to his friend’s answers. From then on, he had speculated that his sense of smell might be different compared to his classmates.

I thought that it was a very interesting story from my brother’s point of view. It made me want to understand more about the life of people who has this condition.

With the loss of smell, other senses, such as texture and temperature, may become more important in the overall eating experience. People with anosmia may pay greater attention to the mouthfeel of foods and the temperature variations to compensate for the diminished flavor perception.

When asked about my brother’s description of foods, he often uses words like hot, cooling, numbing etc. This further shows that people with anosmia pay more attention to things like temperature variations when tasting/describing foods.

SPICY TANGY FLAVOURFUL SAVOURY

BLAND UMAMI SALTY SWEET

STEPPING INTO HIS SHOES

THE PANDEMIC

My brother and I used to have a very close relationship when we were younger. While of course there were numerous fights every now and then, we always moved past it and focused on having fun.

However as we started to grow older and had more responsibilities like school life, we started to have less and less time to bond and hang out like we used to. Although this distance may not have been obvious at the start, it became painfully obvious when we look through old photos of our younger selves. Additionally, I had based a previous project on my brother, and being able to talk to him through the project had really made me emotional and reminsce our close relationship.

After being diagnosed with his condition, it did not affect me much. For the most part, I would just occasionally ask him questions about his condition and that would be the end of it. However the pandemic rolled in, and the coronavirus was wildly spreading. I was no exception.

I remember being very sick one night, having major headaches and runny nose. My father and I made our way to the clinic, expecting it to just be a normal fever. To our surpise, I had tested positive. I remember testing my sense of smell, and realised that I couldn’t smell. I went home and had to quarantine myself. Along with my lack of smell, I was not able taste food as well. During the period when I had this loss of taste and smell, it made me think if this was my brother’s everyday. Not being able to fully taste food, and only finding it bland and plain.

It allowed me to step into my brother’s shoes for a week. I had also taken advantage of my lack of smell and taste by trying foods I don’t like such as pickles or eggplants and since I couldn’t taste, the flavour of pickles and eggplants that I hate so much wasn’t there. While this was one good thing about the lack of smell and taste, I also could not taste or smell the foods that I loved.

I was happy when I got my sense of smell and taste back, it also allowed me to understand my brother’s condition a bit more and I was able to empathise with him. I had a small chat with him about this topic and it was like we were back to having that fun casual talks when we were younger again.

While having the coronavirus made me feel very weak and tired all the time, this was one good thing that came out of that experience.

IS IT REALLY

So it comes to this question, is having a sense of smell really important?

Anosmia, the loss of the sense of smell, can have significant implications for an individual’s quality of life. It can affect their ability to enjoy food, detect potential hazards, and experience the world around them fully. Additionally, it can impact emotional well-being and may lead to changes in eating habits and social interactions.

My brother answers that having a sense of smell definitely helps, for example having a strong sense of smell would allow you to notice gas leaks quicker and having a lack of smell means missing out on nice aromas such as flowers or perfume.

My parents answers that having a sense of smell might be more important back then when we depended on our sense of smell to detect spoiled foods or dangerous gases. However they felt that with modern technology, these issues have been almost eliminated to zero. The only thing that my brother would miss out on is the full eating pleasure.

IMPORTANT?

I feel that having a sense of smell is definitely more convenient and safe for one’s self. We still rely on our sense of smell to detect potential dangers such as harmful gas, spoiled food, monitering our personal hygiene etc. However I agree that our modern world has many alternatives to sensing this danger and our sense of smell is not totally necessary to protect our body from these dangers. On the other hand, we shouldn’t be too reliant on technology, it would be more efficient to rely on our own senses.

I do feel that having no sense of smell isn’t all too bad. You wouldn’t be able to smell foul smells such as dog poop etc. which is why my brother takes charge in cleaning up after our pet dog. You would also be more open to try more foods as the flavour may not be as strong compared to an individual who has a normal sense of smell.

Overall, having a sense of smell is vital as it enhances taste perception, helps detect spoiled or harmful foods, triggers emotional responses and memories, alerts us to potential dangers, assists with personal hygiene, contributes to appreciating the environment, and plays a role in social interactions. However my brother doesn’t let the disadvantages get to him and lives life to the fullest.

THAT IMPORTANT?