Ragyogj kicsi Napsugár! - Reménnyel a reménytelenség ellen

Napfény ömlik be az üvegablakokon, odakint szinte nyári meleg van, pedig csak április elején járunk. Papucsban és köntösben csattogunk át a szülészetről a másik épületbe, hogy intézzük a gyerekek anyakönyvi kivonatát. Az egyik név, Sipos Sándor, a gyermekemé, a másik, Bach Réka Napsugár. Lehetne a ragyogó tavasz miatt, de az igazi ok az, hogy ő a szülei szemefénye-napsugara. Ekkor még nem sejtjük, hogy hamarosan komor-sötét felhő árnyékolja be a napsugarat.

 

A hamarosan négyéves Rékán, a kívülállónak csak annyi tűnhet fel, hogy a járása bizonytalan, és nem teljesen lehet érteni, amit mond. Egyébként egy mindig mosolygós, gyerekeket imádó, közösségi kis palánta.

 

Erzsivel, egy huszonéves, öltözékében is fiatalos lánnyal és Rezsővel egy harmincas, rövidre nyírt hajú fiúval beszélgetek egy lakótelepi lakásban. Két, mindig vidám és jó humorú emberrel. Ők Réka szülei.

 

Ahogyan azt egy szülő látja

 

Félve teszem fel a kérdést, hisz ez olyan dolog, amiről nagyon nehéz lehet beszélni, félek, felkavarok emlékeket, amelyeket ők inkább felejtenének.

 

- Milyen betegsége van Rékának?
- Cini, ahogyan szülei becézik, egy genetikai eredetű betegségben szenved, a neve: neurofibromatózis - mondja Erzsi látszólagos nyugalommal.
- Mi volt a betegség tünete?
- Tán egy hónapos lehetett Réka, mikor két, barnás elszíneződés keletkezett a bőrén. A védőnőt kérdeztem, hogy mi lehet az. Ő és a doktornőnk is mondta, hogy a folt egy idegrendszeri betegség tünete lehet, de ne ijedjünk meg, figyeljük folyamatosan Rékát. Természetesen nagyon megijedtünk és bár nem ajánlották, de mi, a foltok elnevezése alapján azonnal utánanéztünk a tünetnek. Akkor ijedtünk csak meg igazán, mikor azt találtuk, hogy ez egy gyógyíthatatlan betegség tünete lehet.

 

A gyermekorvosnál és védőnőnél

 

Egy rajzokkal teli gyermekorvosi rendelőben ülök és várom a gyermekorvost Dr. Schultheisz Katalint és a védőnőt Bajkóné Lohner Évát.

 

- Mi a gyermekorvos feladata egy ilyen betegnél?
- A folyamatos kapcsolattartás a legfontosabb, hogy a pácienst időről-időre lássam, valamint, hogy a szülő jelezze, ha valami szokásostól eltérőt észlel. Az elváltozások csak a tünetek megjelenésével együtt jelentenek tennivalót. Amennyiben viszont már tünet is van, akkor minél előbb cselekedni kell. Sokszor persze a szülőknek nehéz ezt ölbe tett kézzel várni – mondja Katalin végig komoly tekintettel.
- Védőnőként miben tudott segíteni Erzsiéknek? – kérdezem Évát.
- Sokszor a betegség gondolatának elfogadása is nagyon nehéz, Erzsiéknek ez könnyebben ment. Rajtuk látszott, hogy mindent, minél előbb akarnak tudni. Tájékoztattam őket arról, hogy a gyermek fejlődése során mire kell fokozottabban, illetve külön figyelni.

 

Orvostól orvosig

 

A hét minden napján beszélek Erzsivel és férjével, próbálom megérteni a betegséggel kapcsolatos rengeteg adatot és összefüggést. Szerencsére sosem veszik zaklatásnak a jelentkezéseket.

 

- Miért kellett szakorvosokhoz fordulnotok?
- Három hónaposan Rékának már hat foltja volt, amely már diagnosztikai értékű tünet. Ekkor tudtuk meg a betegség nevét, a doktornő pedig ajánlott egy genetikust.
- Igen, emlékszem engem kértél meg, hogy vigyelek el benneteket kocsival, mivel autó nélkül nehéz lett volna egy pici gyerekkel átutazni a város másik végébe. Pityeregve jöttél ki a vizsgálatról, de nagyon erős voltál, pár perc múlva már újra nevetgéltünk. De mit is mondott a doktornő?
- Elmondta, hogy a folt még nem feltétlenül jelent betegséget, ahhoz, hogy annak lehessen nevezni, hét tünetkritériumból (ld. keretes szöveg) kettő-háromnak kell megjelennie. Sajnos Rékánál három már ekkor is jelentkezett.

 

Dr. Klujber Valériát kérdezem, aki nagyon kedvesen, érthetően magyarázza nekem, hogy miként látja egy genetikus a betegséget.

 

- Miért fontos, hogy egy NF-es beteg felkeresse a genetikust?
- Sok kérdés merül fel, például, gyerekvállalás estén, vagy ha a családban nem volt még ilyen beteg, mint Erzsiék esetében is, akik így értetlenül álltak a jelenség előtt. Igazából mi információkkal tudunk segíteni, illetve a további szakvizsgálatok elvégzésére ajánlunk orvost.

 

Megint Erzsiéknél vagyok, Réka a konyhában fest (persze, főleg a vizezést élvezi belőle). Erzsi elmerengve mondja:

 

- Tudod, ez egy játékos betegség. (Megborzongok. Ezt csak az tudja így megfogalmazni, aki annyira felülkerekedik a betegségen, hogy így is tudja azt látni.) Van, akinél csak egy tünet jelenik meg, van, akinél több. Nem tudhatod, mikor és mi fog változni, így azt sem, hogy ki, milyen életkilátásokra számíthat.
- A genetikai vizsgálat után mi következett?
- A Heim Pál kórházba mentünk egy bőrgyógyászhoz, aki az egyik szakértője a betegségnek. Ő azt mondta, hogy majd elküld más vizsgálatokra. Telt-múlt az idő és az egy év múlva esedékes kontrollig csak a szemészetre küldtek plusz vizsgálatra, pedig Rékának ekkor már sokkal több foltja volt. A doktornő, bizonyára a mi védelmünkre, azt mondta, hogy nem szükséges utána olvasni a betegségnek, nem tudhatta, hogy mi ezt már megtettük.

 

Mindeközben azt is megtudom, hogy sokszor a betegség miatt családi drámák játszódnak le a háttérben, válások, a szülő pszichológiai kezelése. Szerencsére Erzsiék felfogása, kitartása és tenni akarása még jobban összekovácsolja a családot.

 

Információk, sorstársak

 

- Mindenki ennyire szembe tud és akar nézni a betegséggel, mint ti?
- Egyáltalán nem. Van, aki nem is keresi az információkat. Van, aki a honlapunk fórumát sem olvassa, nehogy szembesüljön a következményekkel, persze teljes mértékben, el nem ítélhető módon – mondja Rezső, Erzsi férje.
- Rezső, te 2005-ben ezt írtad a honlapotokon: „Kislányom beteg, neurofibromatózisban szenved. Nem tudjuk hova, kihez forduljunk. Elkezdem gyűjteni az NF-es anyagokat és megcsinálom az NF Hungary weboldalt.” Tehát kétségbeesésetekben alkottátok meg a betegséggel foglalkozó honlapotokat.
- Valóban. Állandóan böngésztük a netet, ahol kerestük az információkat. Először csak arra használtam a honlapot, hogy egy helyre gyűjtsem az általam talált információkat. Még Erzsinek sem szóltam róla, aki egyik nap örömmel jött haza, hogy talált egy tök jó oldalt a betegséggel kapcsolatosan. Én meg mondtam neki, hogy igen, azt én csináltam. Ekkor szállt be ő is a munkába és kezdte fórumokra felrakni honlapunk elérhetőségét, ekkor már sorstársakat is keresve.
- Találtatok is?
- Három hónapig egy lélek sem jelentkezett, aztán egyre többen megtaláltak minket.
- Akkor igazán hasznos volt az erőfeszítésetek, nem?
- Annyira, hogy a fórumunkon egy másik betegtárstól tudtuk meg, hogy ők neurológushoz is járnak - veszi át a szót Erzsi.
- Gondolom ekkor ti is felkerestetek egyet.
- Igen, ő küldött 2006-ban először MR (mágneses rezonancia) vizsgálatra, ahol kiderült, hogy daganat van Réka agyában, amitől rögtön sokkot kaptunk. Az orvos viszont azt mondta, hogy amíg nem okoz problémát, addig nincs ezzel mit tenni, éves kontrollt javasolt. Nehéz volt elfogadni, hogy megint nem tehetünk semmit, de legalább tisztában voltunk a tényekkel és nem ringattuk magunkat valótlan álmokba, például azzal, hogy Rékánál nem, vagy csak később fognak ilyen tünetek jelentkezni.

 

Meglepő válasz

 

Dr. Farkas Viktor neurológussal beszélgetek a Semmelweis Egyetem I. számú gyermekklinikáján, akihez többször berontanak, hol el kell szaladnia, hol utasításokat ad, látszik, nem sok nyugodt perce lehet.

 

- Mennyiben más a gyógyítás módja ennél a ritka betegségnél?
- Én nem nevezném ritkának. (Meglepődök.)
- Megmagyarázná, hogy miért?
- Az NF-et gyakorisága alapján nem nevezném ritka betegségnek, sokkal inkább a speciális ellátás miatt.
- Ön szerint, hogy kezelhető leghatékonyabban a betegség?
- Mivel megjelenhetnek társuló betegségek fontosnak tartom, hogy legyen egy gondozó orvos, aki odafigyel ezekre, és adott esetben tanácsot ad a további teendőkről. A hatékony kezeléshez több szakorvos csapatmunkájára lenne szükség egy irányítóval az élen.

 

Vizsgálatok sora

 

Erzsivel a konyhában isszuk a kávét:

 

- Rengeteg vizsgálat következett, melyeket évente, félévente ismételni kell. Elmondanád, melyek ezek?
- Járunk genetikushoz, szemészetre, neurológushoz, bőrgyógyászhoz és ortopédushoz. Szükségünk van koponya és gerinc MR-re, amit altatásban végeznek, de vér, vizelet, röntgen és ultrahang vizsgálatokra is. Jól ismerjük a János, Heim Pál és SE kórházakat, valamint az MR Központi Kutatót. Voltunk és még kell mennünk Pécsre, mert lehet, hogy ott fogják műteni a nyáron Réka lábát, mivel kiderült, hogy szövetgyengeség miatt valószínűleg erre szükség van.
- Emellett egy alapítványhoz is jártok készség- és mozgásfejlesztésre, illetve úszásra is, így Réka sokat fejlődött.
- Igen, itt nagy szeretettel törődnek a gyerekekkel, Rékával egy gyógypedagógus foglakozik. Az a szerencse, hogy sikerült olyan orvosokat találnunk, akik tisztában vannak a betegséggel, így elkerültük a téves diagnózist és a félrekezelést, ami sajnos a hasonló ritka betegségeknél előfordulhat.

 

Tudod, azért nincs olyan nap, hogy ne jutna eszünkbe Réka betegsége – mondja inkább elgondolkodva, mint szomorúan.

 

Reménysugarak

 

- Ha jól tudom a RIROSZ-szal /Ritka és Veleszületett Rendellenességgel élők Országos Szövetsége/ úgy kerültetek kapcsolatba, hogy írtatok a fórumukba.
- Igen, és mivel a NF-es betegek közül mi voltunk az elsők, akik beléptünk a szervezetbe, képviselhetjük ezt a betegcsoportot a Szövetségen belül – mondja büszkeséggel a hangjában Rezső.
- Ha jól tudom szerettetek volna egy alapítványt is létrehozni, ami sajnos még nem sikerült.
- Igen, így most csak nem hivatalos szervként, „Segítő Társaság”-ként működünk. Pedig nagyon nagy szükség lenne rá. Gondold csak meg, milyen jól kiépített segítő hálózata van például a vakoknak, siketeknek. Ez a betegség viszont komplex, számos más betegség társulhat hozzá, ezért nekünk még több segítségre lenne szükségünk - magyarázza elmélyülten és szinte szakértőként.

 

Pogány Gáborral a RIROSZ elnökével otthonában beszélgetek.

 

- A médiában is elég nagy visszhangot váltott ki a most februárban, a RIROSZ által szervezett „Ritka Betegségek Világnapja” rendezvény. A nagyobb társadalmi figyelem konkrétumokban is megnyilvánul?
- A nemzetközi nyomásnak, és a hazai javuló szervezettségnek köszönhetően a fokozottabb állami szerepvállalás is kezd megjelenni, amely jelenleg egy szakfelügyeleti, a későbbiekben pedig úgynevezett referencia (gyógyító) központok létrehozását jelenti, melyek információs adatbázisokkal és szakemberekkel nyújtanak majd segítséget - tájékoztat Gábor.

 

Sikerek

 

Rezső, mint oly sokszor, most is a számítógép előtt ül, nézzük a rendezvényről készült fényképeket.

 

- Ti is részt vettetek a rendezvényen. Milyen tapasztalatokat szereztetek?
- A rendezvény és a mi megjelenésünk is sikeres volt, Erzsivel gondoltuk ki és szerveztük meg a játéksarkot, előtte hetekig szponzorok után rohangáltunk, de megérte.
- Megtaláltak benneteket a sorstársak?
- Nem olyan nagy számban, mint amire számítottunk, de ennek oka az is, hogy sajnos sok beteg erősen mozgáskorlátozott.
- Tulajdonképpen hány NF-es beteg lehet Magyarországon?
- A nemzetközi, előfordulási statisztikák alapján háromezer- háromezer ötszáz.

 

Csodálom ezt a két embert, akik munka mellett, fáradtságot nem kímélve harcolnak gyermekükért és segítenek másoknak. Hihetetlen módon emelkednek felül a nehézségeken, és a betegségen. Mégis féltem őket, amikor az alábbi idézetet találom Rezső blog oldalán:

 

„Hogyan éli meg a szülő, ha gyermeke gyógyíthatatlan beteg? Telnek a mindennapjaid. Próbálsz erős maradni, de belül érzed, bármikor elvesztheted őt, akit mindennél jobban szeretsz.”

 

A riportot készítette: Sipos Szilvi

A neurofibromatózis hét tünete, melyből kettő-három megléte utal a tényleges betegségre:

Kettőnél több Lisch-csomó a szemben, hat vagy több bőrfolt (tejeskávé folt), csont deformáció, kettő vagy több neurofibroma (jóindulatú idegdaganat), látóideg daganat, szeplők a test hajlataiban, megjelenés az elsőfokú rokonnál, vagyis a szülőnél.

Megjegyzés: A betegség már újszülött, illetve csecsemőkorban is jelen lehet sajátos, életkorfüggő tünetekkel. Azaz az itt felsorolt, döntően a felnőttkorra
jellemző diagnosztikus ismérveket nem lehet mechanikusan alkalmazni
újszülött, csecsemő vagy gyermekkorban.

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