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We need ‘painless’ glucose monitors, says Mia Chichkarikj, a 16-year-old diabetes patient from North Macedonia

Mia Chichkarikj. Photo: Personal archive, used with permission.

This story is based on original coverage by Meta.mk journalist Antonija Popovska. An edited version is republished here under a content partnership agreement between Global Voices and Metamorphosis Foundation. 

Mia Chichkarikj is a 16-year-old third-year high school student at the Orce Nikolov School in Skopje, the capital of North Macedonia. What makes this young girl a true fighter is that every day for the past ten years, she has had to grapple with Type 1 juvenile diabetes. The only way to manage the disease is through daily insulin shots.

Multiple times each day, she must measure her blood glucose levels with the help of devices that her parents purchased from Germany and Austria, which each cost 60 euros (around 70 US dollars) and only last two weeks. The number of children with diabetes Type 1 is on the rise globally, as well as in North Macedonia and the US. A 2017 news piece from SDK warned about discrimination against children with diabetes in North Macedonia, including refusal of kindergarten staff to tend to their needs.  

Meta.mk journalist Antonija Popovska talked with Mia about her life at home and her surroundings, how she is accepted at school, and the challenges she faces, with the goal of raising awareness about this autoimmune condition.

Mia Chichkarikj | Photo: Personal archive, used with permission.

Meta.mk: Mia, your fight every day with diabetes makes you a true hero. How did it all begin?

Јас живеам и се борам со дијабетесот веќе 10 години. На 30. септември 2011 година, се родив по втор пат бидејќи мојот живот целосно се промени. Тој ден беше најтешкиот ден во мојот живот, никогаш не можев ниту да помислам дека животот ќе ми се смени преку ноќ. Многу пати сум слушнала дека дијабетот е болест, но тоа е само состојба во која клетките на панкреасот не лачат инсулин. Уште од првиот ден јас ја прифатив оваа состојба, па многу често само за да се пошегувам, велам дека дијабетот ќе ми биде најверниот другар низ целиот живот. Постојаната контрола на гликемијата, хипогликемијата како и хипергликемијата навистина ми го отежнуваат животот, но успевам да се изборам со сè. Морам да признаам дека моите родители, моите пријатели и професори се оние кои ме поддржуваат околу мојата борба со дијабетот и тие се оние кои секогаш ми кажуваат дека сум борец.

Mia Chichkarikj (MC):  I have been living and fighting with diabetes for almost 10 years. On the September 30, 2011, I was born for the second time, since my life completely changed. That day was the hardest in my life since I never even thought my life would change overnight. Many times I have heard that diabetes is a sickness, but it is only a condition where the cells of the pancreas aren’t producing insulin. I accepted this condition from day one, so very often in order to make a joke, I’m saying that diabetes will be the most faithful friend throughout my life. Constantly having to control my glucose levels, hypoglycemia, as well as hyperglycemia, have truly made my life difficult, but I manage to fight all of this. I have to admit that my parents, friends, and teachers have always supported me in this fight with diabetes and they are the ones who keep telling me I’m a fighter.

Meta.mk: We live in a society where people are easily condemned, mistreated on various bases. How do the surrounding people react, your fellow students and professors?

Кога го добив дијабетот, цел месец не одев во училиште. Премногу ми недостасуваа соучениците, училиштето, професорите. Во тој период постојано се прашував дали моите соученици ќе ме прифатат со мојата нова состојба или пак повеќе нема да сакаат да се дружат со мене. Морам да признаам дека навистина имав одличен клас, сите ме прифатија и за тие 9 години секогаш ми помагаа. Сега сум средношколка во скопската гимназија „Орце Николов“ и сум им навистина благодарна и на моите соученици и на моите професори кои ме прифатија со мојата состојба. Морам да признаам дека периодот пред да започнам со моето средно училиште беше навистина премногу стресен за мене, бидејќи се плашев дека нема да бидам прифатена од страна на учениците, но сега сум веќе трета година и одлично се снаоѓам во средината.

MC: When my diabetes was diagnosed, I didn’t attend school for a whole month. I missed my friends, the school, and teachers. During that period I constantly wondered whether my fellow students will accept me with my new condition or they will not like to hang out with me. I have to admit I had great classmates, everyone accepted me and during those nine years and they always helped me. Now I’m a high school student at the Orce Nikolov school and I’m very grateful both to my fellow students and professors for accepting me with my condition. I have to admit that the period before starting high school was very stressful for me since I was scared I would not be accepted by my fellow students. But now I’m in my third year and I’m coping well in these surroundings.

Meta.mk: Please describe what a day in your life looks like.

Станувам наутро, веднаш ја мерам гликемијата, а ако е висок резултатот прво се боцкам со инсулин, па потоа појадувам. Aко е низок прво појадувам па потоа примам инуслин. Се разбира истото е и пред ручек и пред вечера, додека пред спиење морам да ставам таканаречен базален инсулин, кој е бавен и ми ја регулира гликемијата во текот на целиот ден. На почетокот, кога ми го дијагностицираа дијабетот, моите најблиски беа исплашени дали ќе успеам да се справам со постојаното мерење на гликемија, но за една недела научив. Тоа многу им ја олесни работата на моите родители.

MC: I get up early in the morning, and measure my glycemia immediately, and it is high, I take a shot of insulin, and then I have breakfast. If it is low, I have my breakfast first and then take my insulin shot. Of course, I do the same before lunch and dinner. Before going to sleep, I have to take basal insulin, which is slow and regulates my glycemia throughout the day. In the beginning, when I was diagnosed with diabetes, my closest family was scared whether I would be able to deal with constantly measuring my glycemia, but I learned the process in a week. It helped my parents tremendously.

Meta.mk: What has to be done in order to ease the lives of children with diabetes?

Мојата најголема желба е сите деца со дијабет во државата да добијат сензори со кои ќе ги одморат малите детски прсти од безброј боцкања. Посакувам да имаме квалитетни инсулини, кои ќе ни помогнат за подобра регулација на гликозата во крвта. Ова нека биде апел до надлежните во Министерството за здравство, сериозно да ја сфатат нашата потреба од сензорите за безболно мерење гликемија и што поскоро да ги обезбедат за сите нас за да ни го олеснат барем малку секојдневното контролирање на гликемијата во крвта.

MC: My greatest desire is for all children suffering from diabetes to receive monitors that will help them to spare their tiny fingers from the constant pricking. I wish we could have good quality insulin that will help us better regulate the glucose in our blood. This should be a plea to the authorities at the Ministry of Health, to take our needs for “painless” glucose monitors seriously and to provide them as soon as possible for all of us…

Mia's mother Jasmina Chichkarikj: We were confused and scared

Mia Chichkarikj with her mother Jasmina Chichkarikj. Photo: Personal archive, use with permission.

“The so-called ‘sweet’ story started exactly 10 years ago when the doctors at the Children’s clinic told us the diagnosis: juvenile diabetes. Firstly, we didn’t know what it was about, but they explained what Mia’s condition was like, and we, the whole family, has to live with it,” said Mia’s mother, Jasmina Chichkarikj.

“We were scared and confused, we didn’t know how to continue. But, with time, we learned that, whether we liked it or not, this will be our everyday life, and slowly we accepted this type of life. Throughout the years we have managed to get through many problems, starting from lack of insulin, which happened many times, so we had to manage by ourselves. Then there was a problem with the devices for measuring glycemia, which are those with stinging the fingers despite our neighbors having painless glucose monitors in the blood. We pleaded to the Ministry of Health to acquire such monitors that will ease the lives of these children, but our petitions fell on deaf ears,” said Jasmina.

She said that every day there are more parents whose children are diagnosed with this type of diabetes.

“We all have to understand that our children are healthy, to think positively and that it really is a condition that with a little bit of effort can be managed well. Our children are our heroes.”

On October 21, two days after Meta.mk published the original version of this interview, the Minister of Health of North Macedonia, Venko Filipche, invited Mia and her mother to the ministry. During the meeting, he announced that due to the article, the government will purchase the necessary medical supplies.

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