Liječenje se treba prilagoditi pacijentu – @idiabetic_cukrzyk

Liječenje se treba prilagoditi pacijentu – @idiabetic_cukrzyk

Intervju s Adriannom Maciejczyk @idiabetic_cukrzyk 

Ova simpatična Poljakinja s pariškom adresom jedna je od mnogih mladih aktivistica s dijabetesom čija je strast dijabetička tehnologija. U sljedećim redcima našeg bloga s influencerima, pročitajte intervju s Adriannom Maciejczyk.

Bok Adrianna! Predstavi se ukratko našim čitateljima.

Rođena sam u Poljskoj i u njoj sam živjela većinu svog 27-godišnjeg života. Kao teenagerici dijagnosticiran mi je dijabetes. Osjećala sam se usamljeno i nisam znala nikoga tko boluje od dijabetesa. Društvene mreže u to vrijeme nisu bile toliko popularne. Ipak, kreirala sam Facebook stranicu jer sam željela upoznati osobe s dijabetesom koje bi mogle odgovoriti na moja mnogobrojna pitanja.

Kada je dijabetes postao tvojim suputnikom i kako tvoj život od tada izgleda?

Bilo je to točno prije 10 godina. Klasični simptomi – često sam se osjećala umornom, pila mnogo vode i gubila na težini iako sam obilato jela. To je sve trajalo preko dva mjeseca. Kada smo saznale za dijagnozu, mama i ja smo bile prestrašene. Tijekom dugog boravka u bolnici sam se još više uplašila jer su doktori govorili da ću razviti komplikacije i kako će moj život ubrzo završiti.  Na neki način mislim da je to vrijeme bilo vezano uz moju buntovničku fazu kada sam mislila da me dijabetes pobjeđuje. Život mi se uistinu promijenio otkad sam se aktivno počela zauzimati za dijabetes. Upoznala sam mnogo prijatelja s dijabetesom koji su mi pokazali kako se nositi s ovim stanjem na pametniji način.

Poljakinja si s pariškom adresom. Kako si preseljenje i život u drugoj državi uskladila s dijabetesom?

Odluka o preseljenju u Francusku, na više od 3 mjeseca, nastupila je kada sam bila prihvaćena na Erasmus program u Parizu. Mnogo je toga trebalo riješiti, između ostalog tu je bio i dijabetes. Pribojavala sam se da će moj put biti nemoguć i baš zato sam odlučila učiti, boriti se i pronaći odgovore. Malo ljudi zna da ukoliko je dijabetes prepoznat kao hendikep, utoliko mogu aplicirati za dodatnu financijsku potporu od strane Erasmus programa. Morate pripremiti puno dokumenata i obrazložiti koliko će vas život vani s vašom bolešću koštati, no isplati se. Iz tog razloga, za vrijeme studiranja nisam morala iz Poljske nositi inzuline, infuzijske setove i ostalo. Ne još. Kada je završio moj Erasmus program, odlučila sam ostati u Parizu, no nisam imala francusko osiguranje. Nisam radila i bila sam još student u Poljskoj. Trebalo mi je otprilike 16 mjeseci dok nisam u potpunosti riješila papirologiju.

Kada uspoređuješ zdravstveno osiguranje ovih dviju država, kojoj bi dala prednost što se tiče dostupnosti pomagala za dijabetes?

Ova dva osiguranja nisu za usporedbu. Poljsko je toliko nepravedno dok u Francuskoj, od trenutka uspostave dijagnoze i kronične bolesti, ostvarit ćete pravo na inzulin, kontinuirane mjerače (FGM ili CGM) i inzulinsku pumpu i to potpuno besplatno. Nema dobnih granica. Podologu možete besplatno otići svaka tri mjeseca. Jednostavnije je biti osoba s dijabetesom u Francuskoj. U Poljskoj, kada napunite 26 godina, jedino što dobivate jesu inzulin i trakice. Inzulinske pumpe su pokrivene od strane osiguranja samo za djecu i mlade. CGM, FGM i inzulinske pumpe omogućene su samo mladim osobama, a znamo koliko je s godinama teško održavati šećere stabilnima te da su vjerojatnosti od mogućih komplikacija veće. Isto tako, starije osobe moraju platiti jedan dio potrošnih pomagala i lijekova (infuzijske setove, inzulin, trakice i ostalo).

 

Kako je krenulo tvoje blogersko putovanje i na kojim te sve društvenim kanalima naši čitatelji mogu pratiti?

Biti 17-godišnjakinja, prepuštena samoj sebi, bez prijatelja s dijabetesom, rezultiralo je mojim blogerskim angažmanom. Željela sam znati smijem li piti alkohol, hoću li biti stigmatizirana od strane prijatelja, što napraviti kada šećer ode u visine. U to me je vrijeme bilo strah pitati išta svog doktora. Trebala sam svoj prostor i spoznaju da postoje i druge osobe s dijabetesom. Tako sam kreirala Ja Cukrzyk (ja, osoba s dijabetesom). Isprva, bila je to mala zajednica, no postupno je počela rasti. Za sve osobe s dijabetesom koje ne pričaju poljski, kreirala sam Instagram profil @idiabetic_cukrzyk gdje danas objavljujem aktualnosti, većinom na engleskom jeziku. Slobodno navrati i reci, bok! :)

 

Nije pacijent taj koji se mora prilagoditi načinu liječenja, već obrnuto – liječenje se treba prilagoditi pacijentu.

 

Koju dijabetičku tehnologiju koristiš? Jesi li od početka dijagnoze bila na inzulinskoj pumpi ili si pak koristila MDI?

Za mene je dijabetička tehnologija velika stvar. Kao bloger nastojim se fokusirati na one stvari u dijabetesu koje su mi zbilja važne. Tehnologija je jedna od njih. Međutim, sve je započelo prije tri godine kada sam upoznala svoje prijatelje s dijabetesom koji su mi rekli sve o pravoj dijabetičkoj tehnologiji. U to sam vrijeme koristila Medtronicovu 640G pumpu i mislila kako je ona najbolja. Danas sam na takozvanom „uradi sam“ (eng. DIY – „do it yourself“) closed loopu te koristim svoju prvu inzulinsku pumpu koju sam dobila dvije godine od dijagnoze. Vlastito angažiranje i istraživanje ovakve vrste tehnologije, koja doista može pomoći osobama s dijabetesom, dovelo me do toga da želim naučeno podijeliti sa svima.

Uvijek mi je bilo rečeno koju tehnologiju trebam koristiti, no ona nije bila dovoljno dobra za mene. Rečeno mi je da trebam imati određenu pumpu, određeni CGM ili FGM, no kada sam počela osluškivati samu sebe i naučila što mi je sve dostupno, shvatila sam zašto nisam uspjela biti dobra tolike godine. Nije pacijent taj koji se mora prilagoditi načinu liječenja, već obrnuto – liječenje se treba prilagoditi pacijentu. Zato, molim vas, ako postoji ijedna fraza iz mog govora koju bih voljela da čitatelji upamte, onda je to ova. Imamo izbor! Sada znam da sam zainteresirana za dijabetes kada ga imam u svom mobitelu. Moji su šećeri stabilni onda kada imam alarme uz koje provjerim stanje i poduzimam potrebne akcije. Često ove alarme znam pomiješati sa zvukovima poruke na mobitelu. Alarmi na inzulinskoj pumpi nisu funkcionirali u mom slučaju. Štoviše, ima ljudi koji neće biti dobro regulirani na pumpi, ali će odraditi savršen posao koristeći penove. Doista, sve je individualno.

Sudjelovala si na nekoliko internacionalnih dijabetičkih konferencija. Jesi li kroz njih stekla mnogo prijatelja?

Većinu svojih dijabetičkih prijatelja sam upoznala na konferencijama. Oni su definitivno zaslužni za moje bolje razumijevanje ove bolesti i ukazivanje na problematiku koja je važna za našu dijabetičku zajednicu. Ne bih rekla da mi isključivo konferencije pomažu u kreiranju objava za Instagram. Kada mogu govoriti o nekoj tehnologiji o kojoj sam čula ili vidjela, onda ću podijeliti tu informaciju sa svojom publikom, nevezano jesam li čula vijest na konferenciji ili ne. Nakon EASD 2019 shvatila sam kako su važna predavanja na kojima su prikazane nove znanstvene studije. Ona su sjajna prilika za učenje onih stvari koje uvelike pomažu u upravljanju dijabetesom. Primjerice – tijekom ATTD 2020 konferencije slušala sam predavanje dr. Revital Nimri, koja je objašnjavala koliko je pre-bolus važan za uspješnu terapiju closed loop-om.

Kako vidiš budućnost razvoja dijabetičke tehnologije?

Prije sam zamišljala da će se pronaći lijek. Još uvijek vjerujem, ali sada vidim da će ipak proći više vremena nego što mislimo. Bliža budućnost biti će fokusirana na pametne inzulinske penove koji će biti precizniji te davati izvještaje kao pumpa ili closed-loop. Nadam se da će industrija više pridavati važnost na pacijentovoj udobnosti, a ne samo na rezultate.

Naša si pratiteljica na Instagramu (počašćeni smo i zahvalni! :) ). Želimo svakim danom biti bolji u našim objavama. Imaš li sugestije ili pak pozitivne kritike?

Kao internacionalna pratiteljica bez znanja hrvatskog jezika, voljela bih vidjeti vaše Instagram objave na dva jezika (ponekad je i samo jedna fraza, dovoljna:)).

 

 Hvala ti što si s našim čitateljima podijelila svoje iskustvo i svakako se nadamo da se vidimo u Hrvatskoj! :)

The treatment needs to be adapted to the patient

Q/A with Adrianna Maciejczyk @idiabetic_cukrzyk

This charming Polish woman with a Parisian address is one of many young activists with diabetes whose passion is diabetic technology. In the following lines of our influencer blog, read an interview with Adrianna Maciejczyk.

Hi Adrianna! Introduce yourself briefly to our readers.

I was born in Poland and I spent there most of 27-years life. When as a teenager I was diagnosed with diabetes, I felt very lonely. I didn’t know anyone like me and social media were not so popular. I created a facebook page as I wanted to find people with diabetes who would answer my many questions.

When did diabetes become your companion, and how does your life look since then?

It was exactly 10 years ago. I started to be very sleepy, I would drink a lot of water and lose weight even when eating a lot. Classic symptoms I would say now. Back then, I lived with undiagnosed diabetes for at least two months. When me and my mum heard the diagnosis, we both were scared. During my long stay at the hospital, it got even worse as doctors would scare me about my life being over and complications. In a way i think this was linked to my rebellious phase when diabetes was just beating me a lot. My life changed when I started to advocate actively for diabetes. I met great diabuddies who showed how deal with diabetes in a smarter way.

You’re a Polish woman with a Paris address. How did you reconcile moving and living in another country? Was that decision a bit of the challenge when diabetes is involved?

The decision of moving to France for a longer than 3 months came when I was accepted for an Erasmus program in Paris. There were so many things to manage at that time, one of them was diabetes. I was scared that it would make my journey impossible but I decided to learn, fight and find answers. Not many people know that if your diabetes is recognized as a handicap you can apply for additional financial support from Erasmus program. You need to prepare many documents and a simulation of how much living abroad with your illness will cost, but  the work pays off. I didn’t have to transport all insulin, infusion sets etc. from Poland. At least not yet. When my Erasmus year has ended I actually stayed in Paris but I didn’t really know how to get french insurance. I wasn’t working, I was still a student in Poland. In the end it took me about 16 months to have things sorted out.

When comparing the health insurance coverage of these two countries, which one would you favor in terms of the availability of diabetes aids (sensors, test strips, infusion sets, insulin pumps…)?

You shouldn’t even compare the insurance systems. The polish one is so unfair. While in France once diagnosed and recognised as chronically ill, you receive your insulin, FGM or CGM even your insulin pump for free. There is no age limit. You can go to a podologue every three months without paying anything and it simply is easier to be a diabetic in France. In Poland, when you are over 26 life gets very though if you need anything more than insulin and test strips. Insulin pumps are covered only for children and young adults. Our CGMs, FGMs and insulin pumps are reimbursed only for young people and we all know that the older you get the harder it is to have your blood sugars stable and the risk of complications is bigger. Also older people need to pay some part of their expenses linked to diabetes treatment (infusion set, insulin, test strips etc.).

How did your blogging journey begin and on what social channels can our readers follow you?

It was a result of being a 17 years old teen on my own, without any diabetic friends. I wanted to know if I was allowed to drink alcohol or if I would be judged by my mates, or what to do when your blood sugar is really high because you didn’t do something. I was scared to ask a doctor about, but I was only 17 at that time. I needed my safe space, I needed to know there are others. That’s how I created Ja Cukrzyk (I diabetic). At first we were really small but as more and more people arrived to social media we are having bigger audience. For diabetics who don’t speak Polish I created my instagram account @idiabetic_cukrzyk where I now post mostly in English. Come and say hi:)

 

It is not a patient that needs to adapt to a treatment, it is the treatment that needs to be adapted to the patient.

 

What diabetes Technology do you use? Have you been on an insulin pump since the beginning of diagnosis, or did you use MDI?

Diabetes technology is a big thing to me. As a diabetes blogger I am not covering everything anymore. I really try to focus on the aspects of diabetes that are important to me. DiabTechnology is one of them. Howerer, it started only three years ago when I met my diabbudies who told me about the true DiabTechnology. At that time I was on Medtronic 640g and I thought it was the best of the best. Now I am on DIY closed loop with my first insulin pump I got after two years of my illness. Engaging myself in looking for DiabTechnology that can really help diabetics has led me to a discovery that I want to share with all the patients out there. I was always told what technology I should use and it didn’t work well for me. I was told I needed to have a pump, I was told I needed to use this type of CGM, or use a FGM only this way. But when I started to listen to myself and learn about what actually is available for me I understood why I would fail for so many years. It is not a patient that needs to adapt to a treatment, it is the treatment that needs to be adapted to the patient. Please, please if there is one phrase from all my talking that I want the readers to remember it is this one. We have a choice and now I know that I am interested in my diabetes when I have it on my phone. My sugars are stable only when I receive alarms on my phone and I often mistake them with text messages so I check and I take actions. Having the same alarms on my insulin pump didn’t work for me. Moreover, there will be people who will fail on an insulin pump but will do an amazing job on insulin pens. It is really up to the patients

You have attended several international diabetes conferences. Have you made friends through them? Also, are those conferences helping you with your Instagram content? Do you have feedback from your followers?

This will sound funny, most of my diabbudies are from conferences. They were definitely responsible for showing me the way to get better understanding of our disease and of issues important for our diabetes community. I don’t really know if conferences help me with creating content for Instagram. When I can talk about new technologies that I have seen somewhere, I will share it no matter if it is from a conference or not. After EASD 2019 I understood that what is really important in the conferences are the lectures where new studies are shown. This is a great opportunity to learn things that can massively help in diabetes management like during ATTD 2020 I have listened to dr Revital Nimri who was explaining how pre-bolus is vital in a successful closed-loop therapy

How do you see the future of the development of diabetic technology?

Some times ago I would imagine that the cure would be there. I still believe in the cure but I now I see it’s a longer way than we think. The nearest future will be focusing on smart insulin pens that will be more precise and will provide more “like a pump” reports and of course on closed-loops. I hope the industry will be paying more attention to patients’ comfort and not only results.

You are our Instagram follower (we are blushing, but since you can’t see that, let us just say, we are honored thankful :) ). It is our aim to get every day better and better in our content. So, do you have any suggestions or maybe a positive critic?

As an international reader without any knowledge of croatian I would love to see your instagram posts translated in two languages (sometimes even one phrase is enough:)

Thank you for spreading your experience with us, and we are certainly hoping to see you in Croatia! :)

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