Nkhani ya Tom

Mawu ochepa pakukhala ndi EB Simplex

Pamene tikubwerera m'chaka chatsopano ndi zaka khumi, kulowa mu 2020 kumakhala ngati mwayi wabwino wofalitsa ndikugawana mawu ochepa amomwe tingakhalire ndi moyo. epidermolysis bullosa simplex (EBS), ndi cholinga chachikulu chofuna kudziwitsa anthu za vutoli.

Zomwe zili komanso momwe zimandikhudzira

EBS ndi cholowa chobadwa nacho. Nditangoyamba kuyenda makolo anga anaona kuti mapazi anga akutuluka matuza, ndipo panthawiyi ndinapezeka ndi matendawa. Ndi imodzi mwa zingwe zinayi za EB (Junctional, Dystrophicndipo Kukoma mtima kukhala ena atatuwo) ndipo sikufooketsa kapena kuyika moyo pachiwopsezo monga enawo, koma chifukwa chake, odwalawo amakhala okhazikika m'magulu atsiku ndi tsiku, zomwe zimabweretsa zovuta zina.

Popeza ndimatha kuyenda ndamenya mpira. Nthawi zonse ndakhala ndikuchita zamasewera komanso wokangalika ndikukula, motero kuchita nawo zinthu ndikumva ululu ndichinthu chomwe ndimayenera kuzolowera.

Mkhalidwewu umakhudza kwambiri mapazi anga ndikamayenda kapena kuthamanga nyengo yofunda. Ndaphunzira kuti poyambira izi ndi pafupifupi 18 ° C kuphatikiza, koma ndiwapezanso ngati akugwira ntchito mokwanira m'malo ozizira. Matuza amayaka chifukwa cha kukangana, nthawi zambiri kukula kwa mipira ya gofu, yomwe imafanizidwa ndi kupsa kwa digiri yachitatu ndi akatswiri. Matuza nthawi zambiri amapangidwa pamapazi anga, koma amatha kupanga paliponse pamapazi anga; mpira wa phazi, chidendene, pa zala zanga, pakati pa zala zanga, pansi pa zikhadabo zanga, kumbali ya phazi langa.

Momwe ndimachitira nazo

Pofuna kuletsa matuza kuti asamakule kwambiri ndimadula ndi lumo la opaleshoni kenako ndikukankhira, izi ndizovuta koma ndizofunikira kuti zisapitirire.

Mkhalidwewu sikuti ndi ululu wakuthupi komanso wotopetsa komanso wotopetsa. Mphamvu zambiri zimagwiritsidwa ntchito kutsekereza ululu, makamaka m'malo ochezera, ndipo zimakhala zovuta kukhala ndi vutoli pakati pa anthu omwe sakudziwa kuti ndi chiyani. Makamaka monga momwe mapazi anga nthawi zambiri amaphimbidwa ndipo pankhope pake sizidzawoneka kuti palibe cholakwika ndi ine popeza nthawi zambiri palibe chilichonse chowoneka. Nthawi zambiri ndimalakalaka pangakhale liwu losiyana loti "chithuza" lomwe lingagwiritsidwe ntchito kumasulira bwino lomwe liri, popeza anthu nthawi zambiri amazindikira kuti mawuwo ndi ochepa kwambiri. Chifukwa cha kusazindikira kumeneku, komanso kukhala okhazikika m'magulu a anthu, ndizovuta kwambiri zamaganizo ndi zamagulu monga momwe zimakhalira thupi.

Mwamwayi ndimagwira ntchito muofesi, ndi kuvala momasuka, komabe, ngati ndiyenera kugwira ntchito kumalo ovomerezeka kumene nsapato zanzeru ndizofunikira, zomwe zikhoza kuchitika nthawi ina ya ntchito yanga, kuphunzitsa anthu ondizungulira. pa chikhalidwe chidzakhala chofunikira kuti apange kumvetsetsa kuti ndizitha kugwira ntchito mozungulira. Mfundo imeneyi imagwiranso ntchito m’mbali zonse za moyo wanga, kaya ndikuyenda mumzinda kapena kuchita masewera enaake.

Sindinafune kuti chikhalidwecho chizilamulira zomwe ndimachita. Ndakhala nthawi yambiri ya moyo wanga ndikusewera mpira wampikisano komanso kupita kumadera otentha. Monga chotulukapo cha moyo umenewu ndikudziwa kuti ndikumva kuwawa ndikukhala ndi matuza nthawi zambiri kuposa ngati ndikanapanda kukhala motere, koma izi sizinakhalepo m'maganizo mwanga kapena kudzipangitsa.

Prevention

Palibe mankhwala a matendawa, ndipo nthawi zonse ndimauzidwa ndi amayi anga - omwe ali ndi vutoli - kuti kupewa ndikofunikira. Tayesa mitundu yonse yamankhwala ngati njira yodzitetezera, kuchokera ku botox m'mapazi anga mpaka kuviika mapazi anga mu formaldehyde, onse ali ndi milingo yosiyana ya kupambana koma nthawi zambiri palibe chomwe chapanga chilichonse chofanana ndi kukana mwamphamvu. M'malo mwake ndayikapo njira zina pamoyo wanga.

Ndaphunzira kuti kulola kuti mpweya upite kumapazi kwanga n'kofunika kwambiri kuti mapazi anga azikhala ozizira, ndipo ngati mapazi anga ali ozizira matuza sangapangike. Ndimachita izi povala ma flip-flops momwe ndingathere nyengo yofunda, izi zimachepetsanso kukangana. Ndimadziwa bwino za kutentha ndisanasewere mpira, ndipo ndimayesetsa kupewa kusewera ndikudziwa kuti kutsika pafupifupi 20°C. Ndikatuluka tsiku lonse pamwambo ngati ukwati, ndibweretsera ophunzitsa anzeru madzulo. Ma tweaks onsewa pa moyo wanga athandizira pazigawo zing'onozing'ono ndi tizigawo tothandizira kupewa kupewa, koma palibe njira yamatsenga.

Momwe zimamvekera

Njira yabwino yofotokozera ululu ndi yofanana ndi mapazi anga akuyaka moto, ndikukhumba kuzimitsa moto. Kupumula kwakanthawi kochepa ndikuyika mapazi anga pansi pa mpope wamadzi ozizira, omwe amachotsa ululu ndikakhala m'madzi ndipo amafanana ndi kuzimitsa moto panthawiyo.

Kunja kukakhala kofunda ndimawona mapazi anga ngati bomba la nthawi, ndipo pomwe anthu ambiri amayembekezera nyengo yofunda ndimachita mosiyana, ngakhale mwachiwonekere ndimasangalala ndikupeza vitamini D! Mabomba akaphulika ululu utatha, simungayang'ane kwambiri zinthu zomwe zingathe kutanthauziridwa molakwika, ndipo mphamvu zanu zimachoka m'thupi lanu pamene zimagwiritsa ntchito zinthu zake, monga adrenaline, kuthana nazo. Ndikumva kuti zandipangitsa kukhala munthu wokhazikika komanso zidapanga mikhalidwe ina mu umunthu wanga chifukwa chothana nazo.

Kuphatikiza EB Simplex mugulu

Ndaphunzira kuti imodzi mwa njira zazikulu zothetsera vutoli ndiyo kuwongolera kuzindikira kwa anthu ndi kumvetsetsa za mkhalidwewo m’malo molimbana nawo mwakachetechete poopa kuti anthu sangamvetse. Pogawana izi ndikuyembekeza kudziwitsa anthu za epidermolysis bullosa simplex kuti apindule ndi odwala ngati ine ndikuthandizira paulendo wolumikiza anthu, m'malo mokhala mozungulira.

Ndikukhulupirira kuti izi zidzathandiza kudziwa zambiri za EB Simplex ndi zomwe zikuphatikiza.

Written by Tom Ridley