Help me breathe❤️ ENG/EST

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Hello!

I hope you will find a moment to read my story, which I've written as briefly as possible.

My name is Maarja Teder and I suffer from a chronic disease called cystic fibrosis. This disease mainly affects my lungs and because of this, breathing is very difficult for me (it's like breathing through a straw). Everyday activities such as carrying a shopping bag, walking up the stairs, faster movement and other physical activities are difficult for me. You can even say that I can't cope with them, because I have to choose between breathing or doing a specific activity.

The mentioned disease fills the lungs with thick mucus that I can't cough up by myself and I've almost suffocated a few times because of it. My movements are often accompanied by hard coughing fits and pauses for catching my breath. I am constantly hospitalised and need strong painkillers, supplemental oxygen and handfuls of different medications.

There is a medicine now called "Kaftrio" that improves my health and well-being and helps to thin and suppress the mucus. I got to use this medicine for two months thanks to wonderful donors and the NPO Janno Puusepa Fond. It was two WONDERFUL months where I could breathe, move and enjoy life like a human, instead of having to sit attached to my oxygen machines and in the hospital for weeks every other month.

Unfortunately, this medicine is quite unreachable. One month's worth of Kaftrio costs €16,000. And what's even more unfortunate is the fact that our Health Insurance Fund, which is our national health insurance, does not compensate it yet (we hope to get this medicine on the Health Insurance Fund list, but it is a long and difficult process). However, my doctors who are treating me are not very hopeful that I will last without this medicine until the lung transplant, which I have been waiting for for over 4 years. NPO Janno Puusepa Fond does not have enough money at the moment to purchase the medicine, because in addition to collecting donations for Kaftrio, this fund collects money for therapeutic food that people with cystic fibrosis and other diseases need.

I want to keep living very badly. I want to have time to wait for new lungs. I want to be an aunt to my sister's children and be able to chase them around. I want to go to work and cope with life independently. Other people with cystic fibrosis have similar wishes.

And related to that, I have a big request to ask of you. Please share my call for donations. Every share is a tiny step closer to being able to wait for my new lungs and so that other people with the same disease can live even a little better. If you are interested, I am ready to talk about everything related to my health and situation, as honestly and realistically as it is.

Thank you.

Maarja Teder

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Tere!

Loodan, et leiate hetke lugeda mu võimalikult lühidalt kirja pandud read.

Olen Maarja Teder ja põen kroonilist haigust nimega tsüstiline fibroos. Põhiliselt mõjutab see haigus mu kopse ja tänu sellele on hingamine minu jaoks väga vaevaline (hingaks justkui läbi kõrre). Igapäevased toimingud nagu poekoti tassimine, trepist käimine, kiirem liigutamine ja muu füüsiline tegevus on minu jaoks keerulised. Võib isegi öelda, et ma ei tule nendega toime, sest vaja on valida hingamise või konkreetse tegevuse vahel.

Antud haigus täidab kopsud tihke rögaga, mida ma ise ei suuda välja köhida ja mille kätte mõned korrad peaaegu lämbunud olen. Muidu saadavad mu liigutusi kõvad köhahood ja „hingetõmbe“ pausid. Vajan pidevalt haiglaravi, kangeid valuvaigisteid, lisahapnikku ja peotäite kaupa erinevaid ravimeid.

Nüüdseks on välja töötatud ravim Kaftrio, mis parandab mu tervist ja enesetunnet ning vedeldab röga ja pärsib selle teket. Olen seda ravimit tänu headele annetajatele ja MTÜ Janno Puusepa Fondile kaks kuud kasutada saanud. Kaks IMELIST kuud, kus sain inimese moodi hingata, liikuda ja elust rõõmu tunda, mitte ei pidanud istuma oma hapnikumasinate küljes ja iga kuu tagant nädalaid haiglas.

Nimetatud ravim on kahjuks üsna kättesaamatu. Ühe kuu jagu Kaftriot maksab 16 000€. Haigekassa seda ravimit kahjuks veel ei kompenseeri (loodame seda ravimit haigekassa nimistusse saada, aga see on pikk ja vaevaline protsess). Minu raviarstid ei ole aga eriti lootusrikkad, et ma ilma selle ravimita kopsusiirdamiseni, mille järjekorras olen üle 4 aasta olnud, vastu peaksin. MTÜ Janno Puusepa Fondil ei ole aga rohkem rahasid ravimi soetamiseks, sest lisaks Kaftrio jaoks annetuste kogumisele kogub see fond rahasid ravitoitude jaoks, mida tsüstilise fibroosiga ja teiste haigustega inimesed vajavad.

Ma nii väga tahan veel elada. Tahan jõuda uued kopsud ära oodata. Tahan õelastele olla tädi, kellega tagaajamist saab mängida. Tahan tööl käia ja iseseisvalt eluga toime tulla. Sarnased soovid on ka teistel tsüstilise fibroosiga inimestel.

Sellega seoses on mul Teile suur palve. Palun jagage mu üleskutset tegema annetusi. Iga jagamine on pisike samm lähemale sellele, et suudaksin ära oodata oma uued kopsud Ja et ka teised sama haigusega inimesed natukenegi paremini elada saaksid. Kui teid huvitab, siis olen oma tervisest ja olukorrast valmis kõike rääkima, täpselt nii ausalt ja reaalselt kui see on.

Tänan teid

Maarja Teder

Organizer

Living life with cystic fibrosis

Living life with cystic fibrosis

Donors

  • Anonymous
  • Donated on Oct 24, 2022
Amount Hidden
  • Märten Nikinen
  • Donated on Oct 20, 2022
  • Recurring Donation!
  • Loodame parimat ❤️

€15.00
  • Anonymous
  • Donated on Oct 06, 2022
€10.00

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Donors & Comments

67 donors
  • Anonymous
  • Donated on Oct 24, 2022
Amount Hidden
  • Märten Nikinen
  • Donated on Oct 20, 2022
  • Recurring Donation!
  • Loodame parimat ❤️

€15.00
  • Anonymous
  • Donated on Oct 06, 2022
€10.00
  • Anonymous
  • Donated on Oct 05, 2022
€15.00
  • Anonymous
  • Donated on Oct 04, 2022
€10.00
  • Anonymous
  • Donated on Oct 04, 2022
€20.00
  • Mart L
  • Donated on Oct 04, 2022
Amount Hidden
  • Pavel Hmeljov
  • Donated on Sep 28, 2022
€20.00
  • Jüri Lutsoja
  • Donated on Sep 26, 2022
€20.00
  • Anonymous
  • Donated on Sep 25, 2022
€10.00
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Followers

13 followers
Thomas Ardell
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€1,378.00
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