Haere ki te ihirangi

He waea atu ki te hunga e noho pāngia ana e te EB Simplex kino i Parani!

Ko te haki Wīwī, kei roto ngā rārangi kikorangi, mā, me te whero poutū, e rere ana i runga i te pou haki i te rangi e kapua ana. E rere ana tētahi haki Wīwī me ngā rārangi kikorangi, mā, me te whero poutū i runga i tētahi pou haki i te rangi e kapua pōuri ana.

Tatou He whakamātautau haumanu i utua e DEBRA UK mō te rongoā psoriasis, apremilast mō te EB Simplex (EBS) he rongoā whānui mō te mate kino, kei te haere tonu i ngā pokapū e whā i Parani engari me nui ake ngā tāngata e whai wāhi mai ana ki ngā kairangahau. Tena koa kōrero ki tō tākuta tohunga EB, ki tō nēhi rānei mēnā kei Parani koe e noho ana, ā, e hiahia ana koe ki te whai wāhi atu. Mēnā he hoa, he whānau rānei āu e noho ana me te EBS kino i Parani, tena koa tohaina mai tēnei tuhinga hei whakaara ake i te mōhiotanga mō te whai wāhi atu ki te whakamātautau GEBULO.

Whakarongo mai i Ko Tākuta Christine Chiaverini te kaiārahi o tēnei whakamātautau o te apremilast i roto i te EBS i roto i tā mātou blog rangahau..

Kei te pupuri te tangata i tētahi pire ma porowhita i te ringa kotahi me tētahi karāhe wai i te ringa kē, e noho ana i runga i tētahi whāriki mārama.

E ono ngā haerenga ki te hōhipera e hiahiatia ana i roto i te whakamātautau e ono marama te roa, ā, ka taea ēnei te haere ki te Hōhipera o te Whare Wānanga o Nice, te Hōhipera o te Whare Wānanga o Toulouse, te Hōhipera Necker Enfants Malades, te Hōhipera Saint Louis rānei.

Ka tukuna ngā papa Apremilast ki ngā pakeke me ngā tamariki e ono tau te pakeke, neke atu rānei, kua whakaūtia te mate ira o te EBS nā ngā huringa o ngā ira mō te keratin-5, te keratin-14 rānei. Me tino kaha ngā tohu EBS kia puta mai ai kia whā ngā mirumiru hou i ia rā, ā, he paearu ārai kei reira, arā, kāore e taea e te katoa te whai wāhi atu. Ka tatauhia te tapeke o ngā mirumiru hou i te tinana o te tangata i ia rā e rātou anō, e tōna whānau rānei i te wā e whakawhiti ana i ngā kākahu mō te wiki i mua i ia haerenga, ā, ka tuhia. Ka whakaritea te toharite o ngā mirumiru hou i ia rā i waenga i te tīmatanga me te mutunga o ngā wā rangahau e toru. He wā maimoatanga waru wiki ēnei me te apremilast, he wā e whā wiki kāore he apremilast, kātahi ka waru wiki anō o ngā papa apremilast. Haunga te whakataurite i te toharite o ngā mirumiru hou i ia rā, ka aromatawaihia, ka tuhia hoki ngā taumata o te mamae, te mākati, te kounga o te oranga me ngā pānga taha o te maimoatanga.

He rangahau tuwhera tēnei, arā, kāore i te 'matapo'. Ka mōhio te hunga katoa e whai wāhi ana ko wai kei te tango i te apremilast me te wā e tango ana, e kore rānei e tango. Kāore he mana whakahaere placebo nā te mea ka whakaritea ngā tohu EB takitahi o ia tangata i ngā wā e tango ana rātou i te apremilast ki te wā kāore rātou e tango ana. Ko tētahi wāhanga o tēnei hoahoa rangahau ko te āhua o te EB he mate onge e uaua ana ki te whakauru i te tini o ngā kaiuru, engari ko te tikanga hoki ka whiwhi te hunga katoa e whai wāhi ana i te rongoā e whakamatautauria ana.

Tokorua ngā tāngata e rūrū ringa ana, he ōrite te kiri o tētahi, he mate kiri kiri tō tētahi, he mārama noa iho te papamuri.

He papa rongoā a Apremilast, e hokona ana i raro i te ingoa waitohu Otezla, e whakamahia ana i tēnei wā hei rongoā i ngā mate mumura ā-pūnaha tae atu ki te psoriasis i te UK, te United States me te European Union. Ka mahi mā te whakamarie i ngā wāhanga motuhake o te tukanga pūnaha ārai mate e kiia nei ko te mumura, e puta ana hei whakautu ki te kino o te kiri. E mōhiotia ana ētahi pānga taha o te tango i te apremilast, tae atu ki te puku pōuri ka pā pea ki te hauwhā o te tangata, ā, ka kino pea i roto i ngā wiki tuatahi o te tango. Ka āta aroturukitia ngā pānga taha i roto i te whakamātautau, ā, pērā i ngā whakamātautau haumanu katoa, ka taea e te hunga e whai wāhi ana te whakamutu i tētahi wā mō tētahi take, ahakoa kua hainatia ngā puka whakaae katoa.

Ka taea e koe te pānui atu mō ngā taipitopito o tēnei whakamātautau haumanu i roto i te BMJ Open medical journal a ki te tuhinga reo ngawari rite i runga i To tatou paetukutuku.

Moko o DEBRA UK. Kei roto i te waitohu nga tohu papanga puru me te ingoa o te whakahaere. Kei raro iho, ko te kupu tohu "The Butterfly Skin Charity.
Kaupapa Whaiaro

Ka whakamahia e tenei paetukutuku nga pihikete kia taea ai e matou te whakarato ki a koe te wheako kaiwhakamahi pai ka taea. Kei te rongoa nga korero Kuki i roto i to rorohiko me te mahi i nga mahi penei me te mohio ki a koe ka hoki mai koe ki to maatau paetukutuku me te awhina i to taatau ki te marama ko nga waahanga o te paetukutuku ka kitea e koe he mea tino pai, he whai hua hoki.