Loaʻa pinepine iā ʻoe nā maʻi ʻaleka me nā kiko ʻulaʻula a me ka maneʻo ma kou kino holoʻokoʻa? He Mastocytosis paha kēia!

Ke ʻike pinepine nei ʻoe i nā ʻulaʻula, ka ʻāʻī, a i kekahi manawa nā ʻōhū nui ma kou kino? A i ʻole ke ʻeha nei ʻoe i kahi hopena alerike nui i kahi mea liʻiliʻi loa no nā lā? Manaʻo paha ʻoe, "Ke loaʻa nei iaʻu kekahi hopena alerike." Eia naʻe, i kekahi manawa ma hope o kēia mau hōʻailona, ​​​​aia paha kahi maʻi kakaikahi a mākou i lohe ʻole ai. ʻO kekahi o ia ʻano ʻo `(Mastocytosis)`. ʻOiai ke kani iki nei ka inoa, e kamaʻilio maʻalahi kākou e pili ana.

He aha ka Mastocytosis? I ka ʻōlelo maʻalahi...

E noʻonoʻo, i loko o ko kākou kino aia nā pūnaewele e like me nā kiaʻi palekana liʻiliʻi. Kāhea mākou iā lākou he "mau pūnaewele mast." ʻO kēia mau "mau pūnaewele mast" he ʻāpana ia o kā mākou "ʻōnaehana pale ." Ua like lākou me nā pūʻali palekana o ko kākou ʻāina. Ke komo nā ʻenemi e like me nā germs, bacteria, a me nā allergens i loko o ke kino, hele mai kēia mau "mau pūnaewele mast" a kaua.

Ke pane aku kēia mau `(nā mast cells)` i nā ʻenemi, hoʻokuʻu lākou i kahi kemika i kapa ʻia ʻo `(histamine). ʻO kēia `(histamine)` ke kumu o nā hōʻailona maʻi i loko o ko mākou kino (no ka laʻana, ka maneʻo, ka ʻulaʻula o ka ʻili, ka pehu ʻana). Kōkua pū kēia mau `(nā mast cells)` i ka hana ʻana i ka waikawa i loko o ka ʻōpū.

ʻO ka maʻamau, hana kēia mau `(nā mast cells)` i kā lākou hana a kāohi i nā ʻenemi a laila e noho mālie hou. Eia naʻe, ʻo ka mea e hana ʻia ana i loko o ke kino o ke kanaka me `(Mastocytosis)` ʻo ia ka hoʻonui ʻia ʻana o kēia mau `(nā mast cells)` me ke ʻano ʻē a me ke kāohi ʻole ʻia. Ke hoʻonui lākou e like me kēia, hoʻokuʻu nui kēia mau cell i ka `(histamine).` ʻO ia ka manawa e loaʻa ai iā ʻoe kahi maʻi allergy nui i ka mea liʻiliʻi loa, a i ʻole ke loaʻa iā ʻoe kahi maʻi allergy, ʻoi aku ka ʻino ma mua o ke kanaka maʻamau, a ʻoi aku ka lōʻihi o kona mau lā.

ʻO ka mea nui loa, ʻo nā mea a pau me Mastocytosis e piʻi aʻe ana ka pilikia o ka anaphylaxis , kahi hopena alerika koke, koʻikoʻi, a hiki ke hoʻoweliweli i ke ola . No laila, he mea nui e makaʻala i kēia.

ʻOiai ʻaʻole hiki i nā kauka ke ho'ōla loa i ka Mastocytosis, hiki iā lākou ke kaohi i nā hōʻailona a mālama i nā pilikia e kū mai ana.

He aha nā ʻano nui o ka Mastocytosis?

ʻElua ʻano nui o kēia maʻi:

1. Mastocytosis ʻili: Hana pinepine kēia i nā pēpē a me nā keiki liʻiliʻi . Eia nō naʻe, hiki nō hoʻi ke hana i nā pākeke. ʻO ka mea e hana ʻia ma ʻaneʻi, ʻo ia ka hōʻiliʻili ʻana o nā "mast cells" maʻamau ʻole i loko o ka ʻili, e hana ana i nā pehu ʻulaʻula maneʻo, ʻulaʻula ʻeleʻele, ʻeleʻele, a i ʻole nā ​​​​​​pehu a me nā kiko i hui pū ʻia. Ua like ia me kahi keiki liʻiliʻi i loaʻa koke i nā kiko ʻulaʻula he nui ma ko lākou kino a ʻōpala mau lākou iā lākou.

2. Systemic Mastocytosis: ʻIke pinepine ʻia kēia ʻano i nā pākeke.Maanei, hōʻiliʻili nā "mast cells" ʻano ʻē i loko o nā ʻōpū o loko e like me ka iwi iwi, nā iwi, ko kākou ʻōnaehana hoʻoheheʻe, a me nā māmā. E noʻonoʻo, inā hōʻiliʻili nui kēia mau cells i loko o ka iwi iwi, hiki iā ia ke hoʻopilikia i ka hoʻokumu ʻia ʻana o kā kākou mau cells koko. Eia kekahi, inā hoʻonui kēia mau cells i loko o ka ʻōpū, hiki iā lākou ke hana i ka nui o ka waikawa ʻōpū a hoʻoulu i nā ʻōpū ʻōpū.

He maʻi maʻamau anei kēia?

ʻAʻole, he maʻi laha ʻole kēia. Wahi a nā noiʻi, ua ʻōlelo ʻia hoʻokahi wale nō i loko o ka ʻumi tausani (10,000) a i ʻole hoʻokahi i loko o iwakālua tausani (20,000) poʻe e loaʻa ana i kēia maʻi. No laila, he mea maʻamau ka ʻike ʻole o nā kānaka a pau e pili ana i ia mea.

He aha nā hōʻailona hiki ke loaʻa o ka mastocytosis?

I ka piʻi ʻana o kēia mau "mast cells" me ke ʻano ʻē, hiki ke ʻike ʻia nā ʻano hōʻailona like ʻole. ʻOiai he akahai loa kēia mau hōʻailona no kekahi poʻe, hiki ke koʻikoʻi no kekahi.

• ʻEha iwi: Manaʻo e like me ka ʻeha ʻana o kou mau iwi.
• Ka maʻi kahe (ʻeha ʻōpū): Pono e hele pinepine i ka lua.
• Ka mae ʻana (e like me ka nalowale ʻana o ka ʻike): Ua polū koke nā maka a me he mea lā ua nalowale kou ʻike.
• Ke kūlana hopohopo a me ka makaʻu mau: Ke hopohopo nei no ke kumu ʻole.
• ʻUlaʻula: ʻUlaʻula koke o ka ʻili a puni ke kino.
• Nā pehu a i ʻole nā ​​kiko ma ka ʻili: E like me kā mākou i kamaʻilio ai ma mua.
• ʻEha poʻo: ʻEha poʻo pinepine.
• ʻO ka poniuniu i hoʻokumu ʻia e ke koko haʻahaʻa: He manaʻo o ka poniuniu i ke kū ʻana mai kahi kūlana kū.
• ʻEha hui: ʻEha hui.
• Nā kiko ʻulaʻula a ʻeleʻele paha ma ka ʻili: He maneʻo paha kēia a ʻaʻole paha.

I ka makahiki hea e hoʻomaka ai ka mastocytosis?

ʻOkoʻa ia ma muli o ke ʻano o ka maʻi. Ma ke ʻano laulā:

• Mastocytosis ʻili: Hiki i kēia ke hoʻopilikia i nā pēpē hānau hou.
• ʻO ka Mastocytosis ʻōnaehana: Hoʻopilikia pinepine ʻia i nā pākeke ma luna o 50 mau makahiki.

He aha ke kumu o kēia?

ʻAʻole ʻo `(Mastocytosis)` kahi mea i hānau ʻia ai mākou. Hoʻokumu ʻia ia e nā mutations i loko o nā genes i kapa ʻia ʻo `(KIT genes)`. ʻO kēia mau `(KIT genes)` he mau genes e kōkua ana i kekahi mau ʻano cell, e like me kā mākou mau cell koko, `(mast cells)`, e ulu. I loko o `(Mastocytosis), hāʻawi kēia mau `(KIT genes)` i mutated i ka hōʻailona hewa i `(mast cells)` e "hoʻonui nui a ulu me ke kāohi ʻole ʻia."

He aha nā mea e hoʻoulu ai i ka mastocytosis?

Hiki ke ʻokoʻa kēia mai kēlā kanaka a kēia kanaka. ʻAʻole like nā mea hoʻonāukiuki o kēlā me kēia kanaka. Eia nō naʻe, aia kekahi mau mea e hiki ke hoʻonui i nā hōʻailona:

• Ka hamo ʻana a i ʻole ke kahakaha ʻana i ka ʻili: Hiki ke hana kēia i kekahi poʻe ma ke komo wale ʻana i nā lole paʻa.
• Hoʻoikaika kino a me ka hana kino nui.
• Nā ʻaki a nā nahu pepeke:ʻOi aku hoʻi nā holoholona e like me nā ʻanuʻu, nā nalo meli, a me nā pi.
• Ka inu ʻana i ka waiʻona.
• Kekahi mau meaʻai: ʻOi aku ka mea ʻala, nā meaʻai i hoʻomoʻa nui ʻia.
• Kekahi mau lāʻau lapaʻau: No ka laʻana, nā lāʻau ʻeha i kapa ʻia ʻo "NSAIDs" (Nonsteroidal anti-inflammatory drugs), nā mea hoʻomaha ʻiʻo, a me nā anesthetics "(anesthesia)".
• Nā loli koke o ka mahana: E like me ka lele ʻana i loko o ka wai anuanu loa.
• ʻO ke kaumaha kino a noʻonoʻo paha: He hopena nui kēia pinepine.

He aha nā pilikia e hiki ke loaʻa mai ka mastocytosis?

Hiki i kēia maʻi ke hana i nā pilikia olakino ʻē aʻe, e like me:

• Osteoporosis: ʻO kēia ke kumu e nāwaliwali ai nā iwi a maʻalahi hoʻi e haki.
• Nā pilikia o ke akepaʻa: ʻO ia ke ʻano e pehu ai ke akepaʻa a hana pono ʻole.
• Cytopenia: Ka hiki ʻole o ke kino ke hana i nā hunaola koko lawa.
• Nā maʻi pinepine.

Pehea e ʻike ʻia ai ka mastocytosis?

E nīnau kāu kauka e pili ana i kāu mau hōʻailona a nānā i kou ʻili. Eia kekahi, hiki iā lākou ke hana i nā hoʻokolohua e like me:

• Nā hoʻāʻo koko: E nānā i ka pae o kahi enzyme i kapa ʻia ʻo "tryptase" i loko o kou koko. ʻO kēia "tryptase" kahi mea a nā "mast cells" e hoʻokuʻu ai i ka wā e pane ai lākou i nā ʻenemi.
• Iwi scan: No ka nānā ʻana i ka pohō o ka iwi.
• Biopsy iwi ʻiwi: Lawe ʻia kahi laʻana o ka iwi ʻiwi a nānā ʻia no nā pūnaewele mast ʻē.
• Nā hoʻokolohua hoʻoilina: Inā loaʻa iā ʻoe ka Systemic Mastocytosis, hiki ke hoʻāʻo ʻia ʻoe no nā hoʻololi ʻana i nā genes KIT.

He aha nā lāʻau lapaʻau no ka mastocytosis?

ʻOkoʻa nā koho lapaʻau ma muli o ke ʻano o ka maʻi a me kou mau hōʻailona. Hoʻohana pinepine nā kauka i nā lāʻau lapaʻau a me nā lāʻau lapaʻau ʻē aʻe e hōʻoluʻolu i nā hōʻailona.

Nā ʻano lāʻau i hoʻohana ʻia no ka mastocytosis:

• Nā antacids no nā pilikia ʻōpū (Antacids - H2 blockers): No nā mea e like me ka mumū o ka ʻōpū a me ka gastritis.
• Nā Antihistamines: E hōʻemi i nā hōʻailona maʻi ʻili e like me ka maneʻo a me ka ʻulaʻula.
• Nā Bisphosphonates no ka osteoporosis: Hoʻoikaika i nā iwi.
• Corticosteroids: E hōʻemi i ka pehu.
• Nā antibodies monoclonal: ʻoi aku hoʻi nā lāʻau lapaʻau e like me omalizumab (Xolair®).
• Lāʻau ʻeha .

Nā lāʻau lapaʻau ʻē aʻe:

• Ka lāʻau lapaʻau kukui Ultraviolet (UV): E hōʻemi i nā kiko ʻeleʻele ma ka ʻili.
• Hoʻōla i kuhikuhi ʻia .
• ʻEpinephrine no ka anaphylaxis:He lāʻau lapaʻau ulia pōpilikia no kahi maʻi alerika koʻikoʻi.
• Chemotherapy: He mea kākaʻikahi loa kēia a hāʻawi wale ʻia inā lilo ka Mastocytosis i ka maʻi kanesa.
• ʻO ka hoʻoili ʻana o nā cell kumu allogeneic (iwi iwi): Manaʻo ʻia kēia i nā hihia koʻikoʻi a paʻakikī hoʻi o ka mastocytosis. ʻAʻole pono ka hapa nui o ka poʻe i kēia.

Aia kekahi mau pilikia a i ʻole nā ​​hopena ʻaoʻao o ka lāʻau lapaʻau?

ʻAe, e like me nā lāʻau lapaʻau āpau, aia kekahi mau hopena ʻaoʻao e hiki ke loaʻa me nā lāʻau lapaʻau no Mastocytosis. He mea liʻiliʻi paha kekahi, aʻo kekahi e ʻoi aku ka koʻikoʻi. Inā loaʻa iā ʻoe ka Mastocytosis, e wehewehe kāu kauka i nā lāʻau lapaʻau āu e loaʻa nei a me nā hopena ʻaoʻao hiki.

Hiki ke ho'ōla loa ʻia ka mastocytosis?

Ma keʻano laulā, ua manaʻo ʻia ka Mastocytosis he maʻi hiki ʻole ke ho'ōla loa ʻia, akā hiki ke mālama ʻia ma o ka kaohi ʻana i nā hōʻailona a me ka mālama ʻana i nā pilikia .

ʻO ke ʻano lapaʻau wale nō e hiki ke ho'ōla no kēia, ʻo ia ka "allogeneic stem cell (bone marrow) transplantation" i ʻōlelo mua ʻia. Eia nō naʻe, ua ʻōlelo ʻia kēlā no nā poʻe maʻi me nā kūlana koʻikoʻi a paʻakikī loa.

Ke ʻoi aku ka ʻino o ka Mastocytosis i ka hala ʻana o ka manawa?

Inā ʻaʻole mālama ʻia, hiki i nā hōʻailona ke ʻoi aku ka ʻino i ka hala ʻana o ka manawa, ʻoiai i kekahi me ka mastocytosis systemic , ʻoiai ke hoʻomau nei nā cell mast maʻamau i ka hoʻopilikia ʻana i ka iwi iwi a me nā ʻōpū o loko.

Hiki ke pale ʻia ka mastocytosis?

ʻO ka mea pōʻino, ʻaʻole. No ka mea, ua hoʻokumu ʻia e nā mutations i loko o nā genes KIT, ʻaʻohe ala e pale aku ai. Eia nō naʻe, inā loaʻa iā ʻoe ka Mastocytosis, hiki iā ʻoe ke kāohi i kāu mau hōʻailona ma ka ʻike pono ʻana i ka mea e hoʻoulu ai i kāu mau hopena alerika a pale aku iā lākou i ka hiki.

Eia kekahi laʻana, inā loaʻa iā ʻoe kahi mea hoʻoulu no kekahi mau lāʻau lapaʻau, he manaʻo maikaʻi ke kau ʻana i kahi kūpeʻe lima makaʻala lapaʻau e papa inoa ana iā lākou. E hōʻike kēia i nā poʻe ʻē aʻe i nā lāʻau lapaʻau āu e lawe ʻole ai i ka wā o kahi pilikia.

Inā loaʻa iā ʻoe ka Systemic Mastocytosis, he mea nui e lawe mau i kahi syringe ponoʻī e loaʻa ana ka epinephrine. Hiki ke hoʻohana ʻia kēia e mālama i nā hopena alerika koʻikoʻi e hoʻoweliweli ana i ke ola e like me ka anaphylactic shock.

Pehea wau e mālama ai iaʻu iho? (Mastocytosis) ʻOiai e noho pū ana me...

ʻOiai ʻo ka Mastocytosis kahi maʻi hiki ʻole ke ho'ōla piha ʻia, pono paha ʻoe e noho me ia no kekahi manawa. Hiki ke paʻakikī. Eia nō naʻe, eia kekahi mau mea e hiki ke kōkua iā ʻoe:

• E ʻike pono i ka mea e hoʻoulu ai i kāu mau hōʻailona.He ʻokoʻa nā mea hoʻonāukiuki o kēlā me kēia kanaka. Makemake paha ʻoe e mālama i kahi puke moʻolelo a kākau i lalo i ka wā e ʻoi aku ai ka ʻino o kāu mau hōʻailona, ​​​​nā mea āu i ʻai ai a inu ai, a me nā mea āu i hana ai i kēlā manawa.
• Hiki i ke kaumaha ke hoʻonui i kēia mau hōʻailona. Inā makemake ʻoe i ke kōkua i ka hoʻokele ʻana i ke kaumaha, e nīnau i kāu kauka e pili ana i nā papahana hoʻokele kaumaha. Hiki i nā mea e like me ka noʻonoʻo ʻana a me ka yoga ke kōkua.
• E komo i kahi kūpeʻe lima makaʻala lapaʻau. Pono ia e papa inoa i kou kūlana olakino a me nā lāʻau lapaʻau āu e pono ʻole ai e lawe.
• E lawe mau i kahi nila epinephrine auto-injector me ʻoe. Hiki iā ia ke hoʻōla i ke ola inā loaʻa kahi hopena alerika koʻikoʻi.

Āhea wau e ʻike ai i kaʻu kauka?

E loaʻa iā ʻoe nā hoʻokolohua maʻamau me kāu kauka. E nānā lākou i kāu mau hōʻailona a hoʻololi i kāu lāʻau lapaʻau inā pono. Inā loaʻa iā ʻoe nā hōʻailona hou, a inā e ʻoi aku ka ʻino o kāu mau hōʻailona, ​​e haʻi koke i kāu kauka.

Āhea wau e hele ai i ka lumi pilikia?

Inā loaʻa iā ʻoe kahi hopena alerika koʻikoʻi loa i hiki ʻole ke kāohi ʻia me ka lāʻau lapaʻau, e hele koke i ka lumi pilikia. ʻO ia hoʻi, inā ʻike ʻoe i nā hōʻailona e like me ka paʻakikī o ka hanu ʻana, ka ʻāʻī paʻa, ka poniuniu nui, a i ʻole ka nalowale o ka ʻike.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

Inā loaʻa iā ʻoe ka Mastocytosis, he mea maikaʻi ke nīnau i kāu kauka i nā nīnau e like me kēia:

• He aha ke ʻano o ka Mastocytosis i loaʻa iaʻu?
• He aha nā lāʻau lapaʻau i loaʻa no ke ʻano o koʻu maʻi?
• E hoʻopau loa anei ka lāʻau lapaʻau i koʻu mau hōʻailona?
• He aha nā hōʻailona ʻē aʻe e hōʻike ana e ʻoi aku ka ʻino o koʻu kūlana?
• Pono anei au e lawe i ka lāʻau lapaʻau no ka wā pau ʻole?
• Inā loaʻa iaʻu kahi ʻano ʻoi aku ka koʻikoʻi, he aha kaʻu wānana?
• Aia kekahi mau hoʻokolohua lapaʻau e hiki iaʻu ke komo?

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

He maʻi laha ʻole ka Mastocytosis e hoʻoulu ai i ka ulu ʻana o nā cell mast i loko o ke kino me ka ʻole o ka hoʻomalu ʻia. Hiki iā ia ke hoʻopilikia i ka ʻili a me nā ʻōpū o loko. Hiki i ka hapa nui o ka poʻe ke hoʻokele i kā lākou mau hōʻailona ma ka ʻike ʻana a me ka pale ʻana i nā mea hoʻonāukiuki a me ka lawe ʻana i nā lāʻau lapaʻau. He mea nui hoʻi e mālama i kahi inikini epinephrine e mālama i nā hopena allergies koʻikoʻi.

ʻOiai he maʻi kēia ʻaʻole hiki ke ho'ōla piha ʻia, me ke aʻo lapaʻau kūpono a me ka mālama ʻana, hiki iā ʻoe ke hoʻāʻo e kāohi i nā hōʻailona a ola i kahi ola maʻamau. Inā he mau nīnau hou kāu e pili ana i kēia, mai kānalua e kamaʻilio me kāu kauka. E kōkua lākou iā ʻoe.

ʻO ka mastocytosis, nā pūnaewele mast, histamine, allergy, nā maʻi ʻili, ʻōnaehana pale, anaphylaxis