Banja la Hinton - ulendo wathu wa EBS

Kuzindikira mwana wathu anali ndi EB

Sitinamvepo epidermolysis bullosa (EB) m'mbuyomo, si anthu ambiri omwe akhalapo, monga momwe tadziwira.

Pamene mwana wathu, Arthur, anabadwa, anali ndi masinthidwe achibadwa m’majini ake, zomwe zinayambitsa Epidermolysis bullosa simplex kapena EBS, mtundu wofala kwambiri wa EB.

Patangotha ​​masiku angapo atabadwa, tinatumizidwa kwa a akatswiri EB gulu lachipatala ku Great Ormond Street Hospital (GOSH) ndipo kudzera mwa iwo, tapeza DEBRA UK.

Mpaka nthawi imeneyo, kunja kwa chithandizo chamankhwala cha EB choperekedwa ndi gulu ku GOSH, takhala tikuyesera kuyang'anira EBS ya Arthur momwe tingathere, komanso patokha. Tinkadziwa kuti pangakhale thandizo la ndalama kwa ife, koma zinali zovuta kwambiri kuti tipeze. Izi zinali mpaka Amelia wochokera ku DEBRA EB Community Support Team anabwera m'miyoyo yathu.

Thandizo lomwe talandira

Kukhala ndi winawake wonga Amelia pambali pathu amene ankamvetsa zimene tinali kukumana nazo kunathandiza kwambiri. Amatipatsa zidziwitso zothandiza komanso upangiri, anali wabwino, woleza mtima nthawi zonse, ndipo adatiyendetsa polemba fomu yofunsira. Disability Living Allowance (DLA), sitepe ndi sitepe. Anatipulumutsa nthawi yochuluka kwambiri ndipo popanda thandizo lake tikanachoka, chifukwa zinkangoona kuti ndizovuta kwambiri kulemba mafomu ndi zina zonse zomwe timayenera kulimbana nazo.

Amelia adatilimbikitsanso m'malo mwathu kuti anthu omwe amapanga zisankho za DLA amvetsetse momwe chikhalidwe chosadziwikachi chilili, komanso zomwe zimatanthauza kwa banja lathu tsiku ndi tsiku; ola limodzi latha kusintha zovala m'mawa, maola 2 usiku, ndipo chifukwa chake, maola 2-3 osagona, usiku uliwonse.. Izi ndi zenizeni za moyo wathu tsopano, ndipo mwinamwake zofanana kwambiri ndi zenizeni za mabanja ambiri m'dziko lonse lokhudzidwa ndi EB. 

Kukhala ndi DLA kwasintha kwambiri kwa ife. Ndalama za Arthur za DLA zikuphatikizapo kulipira ndalama zambiri zachipatala zomwe amapitako, kuphatikizapo a Maola 5 mpaka 6 ulendo wobwerera ku GOSH, ndi nthawi zonse zimene amakumana nazo mlungu ndi mlungu monga dokotala wodziwa zapansi. DLA imathandizanso ndalama zothandizira akatswiri monga lathyathyathya msoko zovala ndi nsapato, zida kuthana ndi matuza ake ndi kuchotsa nkhanambo/khungu loturuka (monga lumo ndi ma tweezers) zomwe sizikupezeka ndi mankhwala, a mpando wagalimoto wopanda zomangira pamapewandipo zovala za satin Pamalo onse akhala kapena kugonapo. Chifukwa cha mabala ake ndi chithandizo chake tsiku ndi tsiku, amafunikira zosintha zingapo patsiku, komanso zoyala ndi matawulo kuti achepetse chiopsezo chotenga matenda. Kuonjezera apo, DLA imathandiza kulipira ndalama zina zowonjezera magetsi ndi madzi omwe timapeza mwezi uliwonse chifukwa cha kusamba kwake komanso kuunikira kowonjezera panthawi yosamalira bala.

Kudzera mwa Amelia, DEBRA UK idatipatsanso ndalama zothandizira zomwe zidatipangitsa kuti tigule zinthu zaukadaulo zomwe zatithandiza kusamalira bwino zizindikiro za Arthur's EBS kuphatikiza zikopa za nkhosa, zomwe zathandiza kuchepetsa mabala ake ogundana akagona, fani kuthandiza Arthur kuti azizizira m'miyezi yotentha yachilimwe, ndi zovala zapamwamba zopangidwa ndi silika pamene iye anali woyamba kubadwa, zomwe zinapangitsa khungu lake kupuma ndikuthandizira kulamulira kutentha ndi chinyezi - kuchepetsa kuyabwa kwake.

Zovuta za tsiku ndi tsiku zokhala ndi EB

Chifukwa EB ndiyosowa kwambiri, ndi anthu ochepa chabe amene amadziwa kapena kumvetsa mmene Arthur amakhudzira ifeyo monga banja. Zomwe takumana nazo, kuzindikira kumakhala kochepa pakati pa akatswiri azachipatala. Ndife othokoza kwambiri ku gulu la EB ku GOSH, asintha kwambiri miyoyo yathu, koma kunja kwa gulu la akatswiriwa tikufunikabe kuphunzitsa ena za EB. Mwachitsanzo, Arthur akafuna kuyezetsa magazi, tiyenera kukumbutsa anamwinowo kuti sangagwiritse ntchito pulasitala kuti atseke chilondacho, apo ayi chingawononge khungu lake mwa kuchititsa matuza kapena kung’ambika. Amagwira ntchito yodabwitsa, koma mwatsoka ichi ndi chenicheni chokhala ndi chikhalidwe chosowa ngati EB, tsiku lililonse ndi tsiku la 'kuphunzitsa za EB'.

EB ya Arthur imakhudza khungu lakunja (epidermis) la thupi lake lonse. Vuto limodzi lalikulu lomwe tiyenera kulimbana nalo ndikulimbana ndi matenda apakhungu omwe amakhala pachiwopsezo chachikulu chotenga mabala ake tsiku ndi tsiku. Ndi nkhondo yosalekeza, ndipo kuti achepetse matenda, Arthur nthawi zambiri amachiritsidwa ndi maantibayotiki.

Matuza pa mapazi a Arthur akhala ndi zotsatira zoipa pa chitukuko chake. Anali ndi zaka ziwiri ndi theka pamene anayamba kuyenda yekha. Komabe, amatha kuyenda kwakanthawi kochepa asanabwererenso kugwada kuti aziyendayenda m'nyumba chifukwa cha ululu wa mapazi ake. Timadziwa kuti njinga ya olumala ikhoza kukhala yosapeŵeka panthawi ina.

Osadzimvanso wekha

Ngakhale zovuta monga moyo wakhala ukukhala ndi EBS, Tapeza chitonthozo chachikulu ndipo timasangalala kwambiri kuona Arthur akugonjetsa mavuto amene ana ambiri a msinkhu wake amalimbana nawo mosavuta.. Ndi kamnyamata kakang'ono kolimbikira yemwe satenga "ayi" kuti ayankhe! Amakhalanso wokondwa kwambiri ndi wotsimikiza, ngakhale kuti amamva kupweteka kosalekeza ndi kusapeza bwino komwe amapirira.

Vuto lopeza chithandizo pa zosowa za Arthur lakhala losangalatsa kwambiri, kuchokera ku mantha opeza nazale wokonzeka kutenga maudindo owonjezera osamalira mwana yemwe ali ndi EB, mpaka kukondwera kwa tsiku loyamba la Arthur, ndikuwona chisangalalo chomwe amapeza pochita zinthu zosavuta zomwe ana a zaka zitatu amapeza. kuchita tsiku lililonse ku nazale.

Amelia ndi EB Community Support Team yatithandizanso kwambiri mwa kupeza kumvetsetsa kofunikira ndi malipiro kuchokera ku nazale ya Arthur, kuphatikizapo kuzindikira kuti thupi lake likhoza kukhudza mlingo wake wa maphunziro (chifukwa cha ululu ndi kusamva bwino, kupita kuchipatala, ndi zina zotero), ndi kufunika kwa makalasi ake onse kukhala pamlingo umodzi. Kudziwa kuti nazale imamvetsetsa zosowa za Arthur ndipo idzapereka ndalama zofunikirazi kumatilimbikitsa ndipo amachotsa nkhawa zina zomwe Arthur amapita ku nazale.

Chifukwa cha chithandizo chanzeru chomwe timalandira kuchokera ku gulu la EB ku GOSH ndi EB Community Support Team ku DEBRA UK, sitikumvanso tokha ndi EB. Panopa tili ndi anthu otithandiza pa ulendowu, ndipo takumana ndi anthu ena amene akukumana ndi mavuto ofanana ndi amene timakumana nawo tsiku lililonse. Izi zimapangitsa kusiyana kwakukulu. Kungotha ​​kuyankhula, kugawana zomwe takumana nazo ndi malingaliro, zasintha miyoyo yathu kukhala yabwino, ndipo tsopano tikumva kuti ndife gawo la gulu lomwe limathandizirana.