Shona version (English version below)
Pakazvarwa mwanasikana wedu, akaonekwa aine Epidermolysis Bullosa ( EB ), asi takakurumidza kudzidza kuti kuongororwa uku hakuna musoro. Mwanasikana wedu ane mabhuruku senge iwe unoona neEB, asi ganda rake rinokura chaizvo, rine chiyero, uye rinokura uye rakasviba. Takawana kuongororwa kungangoitika kweEI nekuti imwe mhuri yeEI yaive nhengo yeboka rekutsigira reEEB ratakanga tabatana naro, uye ivo vakaziva zviratidzo zvekutaurira. Mhuri iyoyo yakandiisa nemutsa kuti ndibatane naHelen nedzimwe nhengo dzeEI Cure Project. Helen akandipa zano uye mazano ekuchengeta kuti andibatsire kunzwisisa maitiro ekuchengeta ganda remwanasikana wedu, uye maitiro ekuziva kana ganda rakatapukirwa uye zvekuita nezvazvo.
Isu hatisati tine kuongororwa kuri pamutemo, kuongororwa genetic kwatinogara hakupiwi nyore. Nekudaro, takaona kuvandudzwa kweganda remwanasikana wedu nekuda kwezano ratakapiwa kubva kunaHelen nedzimwe mhuri dzeEI, saka isu ticharamba tichitaura naDoctor wedu nezve EI, uye toona panotungamira izvi.
Helen paakakoka nhengo dzeboka rekutsigira kuti ave mumiriri wenyika yavo yeEI Cure Project, ndakasvetuka nemukana wekubatanidzwa.
Iyo EI Cure Project yakakosha kwandiri nekuti vanhu vane EI vane hupenyu hwakaoma uye kuwana mushonga kwaizoreva kuti vanhu vane EI vanogona kurarama hupenyu vasina hutachiona hweganda kazhinji, pasina kugara uchiputika uye kuyera, uye pasina kunzwa kutya kuti chii chingaitika pazuva rinopisa nekuti havagone kutsvaira nemazvo. Kuwana mushonga kwaizoreva kuti mwanasikana wangu nevamwe vakakanganiswa neEI vanogona kunakidzwa zuva rega rega, mune imwe nguva yemamiriro ekunze, uye mune chero mwaka. Ivo vaizove nerusununguko runouya nekunzwa kugadzikana paganda rako. Ndiri kuda izvi zvakanyanya kumwanasikana wangu.
English version
When our daughter was born, she was diagnosed with Epidermolysis Bullosa (EB), but we quickly learned that this diagnosis didn’t make sense. Our daughter has blisters like you see with EB, but her skin grows really fast, has a scale pattern, and gets thick and dark. We found the more likely diagnosis of EI because another EI family was a member of an EB social media support group that we had joined, and they recognised the tell-tale signs of EI immediately. That family kindly put me in touch with Helen and other members of the EI Cure Project. Helen gave me advice and care recommendations to help me understand how to care for our daughter’s skin, and how to recognise when the skin is infected and what to do about it.
We still don’t have a formal diagnosis, genetic testing where we live is not offered readily. However, we have seen improvements in our daughter’s skin as a result of the advice we’ve been given from Helen and other EI families, so we will continue to talk to our Doctor about EI, and see where this leads.
When Helen invited members of the support group to become an ambassador for their country for the EI Cure Project, I jumped at the chance to get involved.
The EI Cure Project is important to me because people with EI have a tough life and finding a cure would mean that people with EI could live a life without frequent skin infections, without constant blistering and scaling, and without feeling afraid of what might happen on a hot day because they cannot sweat properly. Finding a cure would mean that my daughter and others affected with EI could enjoy every day, in every weather, and in any season. They would have the freedom that comes with feeling comfortable in your skin. I want this so much for my daughter.