Ke mānoanoa a paʻakikī nei ka ʻili o kāu keiki? E kamaʻilio kākou e pili ana i ka Juvenile Systemic Scleroderma!

Ua ʻike anei ʻoe ua loli koke ka ʻili o kāu keiki liʻiliʻi? Malia paha ua lilo ka ʻili i mea ʻinoʻino, paʻa, a ʻokoʻa ke ʻano i ka pā ʻana? Inā ʻike ʻoe i kekahi mea e like me ia, pono ʻoe e hopohopo iki. No ka mea, i kekahi manawa he hōʻailona kēia o kahi maʻi i kapa ʻia ʻo Juvenile Systemic Scleroderma , a mākou e kamaʻilio nei i kēia lā. Mai hopohopo, e kamaʻilio mākou e pili ana i kēia me nā kikoʻī.

He aha ka Scleroderma ʻōnaehana ʻōpio?

I ka ʻōlelo maʻalahi, ʻo Juvenile Systemic Scleroderma (i ʻike ʻia hoʻi ʻo Systemic Sclerosis ) he ʻano ia e mānoanoa ai ka ʻili o kāu keiki a ʻoi aku ka paʻakikī ma mua o ka maʻamau. E noʻonoʻo iā ia he ʻāpana laholio e mānoanoa mālie a lilo e like me ka palakiko paʻakikī. ʻAʻole ia i kaupalena ʻia i ka ʻili wale nō. I kekahi manawa, hiki iā ia ke hoʻopilikia i nā kino ʻē aʻe i loko o ke kino o ke keiki. ʻO ka huaʻōlelo 'systemic' ʻo ia hoʻi hiki iā ia ke hoʻopilikia i ke kino holoʻokoʻa o ke keiki.

He maʻi autoimmune maoli kēia. ʻO ia hoʻi, hoʻomaka hewa ka ʻōnaehana pale o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale, e hoʻouka i kāna mau hunaola olakino ponoʻī. I kēia hihia o Scleroderma, i ka wā e hoʻouka ai ka ʻōnaehana pale i nā hunaola ʻili ma kēia ʻano, loaʻa ka mumū a i ʻole ka pehu ʻana o ka ʻili. Ma muli o kēia pehu ʻana, hoʻomaka ka protein i kapa ʻia ʻo collagen, ka mea e hāʻawi i ko mākou ʻili i kona elasticity a me ka ikaika, e hana nui ʻia. E like me ka hana ʻana o kahi ʻeha i ka wā e loaʻa ai kahi ʻeha, ʻo kēia hana collagen keu e hoʻoulu ai i ka fibrosis a i ʻole ka paʻakikī o ka ʻili e like me ka ʻeha.

Aia kekahi mau ʻano nui o ka Systemic Scleroderma?

ʻAe, ʻekolu mau ʻano nui. E nānā kākou i ke ʻano o lākou.

1. Diffuse cutaneous systemic sclerosis: Ma kēia ʻano, hiki ke ʻike ʻia ka mānoanoa o ka ʻili o ke keiki ma ke kino holoʻokoʻa. Eia kekahi, aia paha nā pilikia me ka hana ʻana o nā ʻōpū o loko o ke kino. E noʻonoʻo, ʻaʻole wale nā ​​​​lima, nā wāwae, a me ka maka, akā ʻo nā wahi e like me ka umauma a me ka ʻōpū e hoʻomaka ana e mānoanoa.

2. ʻO ka sclerosis ʻōnaehana ʻili palena iki (CREST syndrome): He mea kūikawā iki kēia. Ua kapa ʻia hoʻi ʻo CREST syndrome . He acronym ʻo CREST i hoʻokumu ʻia ma ka hoʻohui ʻana i nā leka mua o nā hiʻohiʻona nui ʻelima o kēia maʻi.

• C - Calcinosis: ʻO ke ʻano kēia, e waiho ana ka calcium ma lalo o ka ʻili a hana i nā puʻu liʻiliʻi.
• R - Ka hanana ʻo Raynaud: ʻO kēia ka wā e lilo ai nā manamana lima (nā lima a me nā wāwae) i keʻokeʻo, polū, a laila ʻulaʻula i ka wā e hōʻike ʻia ai i ke anu a i ʻole ke kaumaha. Lilo ia i mea paʻakikī ke hoʻoponopono i ka mahana o ke kino.
• E - Ka hana pono ʻole o ka neʻe ʻana o ka esophagus: ʻO ke ʻano kēia, ʻaʻole e hana pono ka ʻōmole e lawe ana i ka meaʻai mai ka puʻu a i ka ʻōpū (ka esophagus) i ka wā e moni ai mākou. Hiki i kēia ke hana i ka ʻāʻī.Hiki ke hana ʻia nā mea e like me ia.
• S - Sclerodactyly: Mānoanoa a paʻakikī hoʻi o ka ʻili ma nā manamana lima. Hiki i nā manamana lima ke pehu a paʻakikī, e like me nā sausage.
• T - Telangiectasia: Hoʻonui ʻia nā kīʻaha koko liʻiliʻi i loko o ka ʻili, e like me nā ʻupena nananana a i ʻole nā ​​kiko ʻulaʻula.

3. ʻO ka sclerosis systemic sine scleroderma: ʻO kēia ka wā e hoʻopilikia ʻia ai nā ʻōpū o loko o ke kino me ka ʻole o ka mānoanoa a paʻakikī paha o ka ʻili. ʻO ke ʻano o 'Sine scleroderma' ʻo ia hoʻi 'me ka ʻole o ka scleroderma (paʻakikī o ka ʻili)'. ʻO ke ʻano kēia, ʻoiai ʻaʻohe loli koʻikoʻi i ka ʻili, hiki ke hoʻopilikia ʻia nā ʻōpū o loko.

ʻO wai ka mea i ʻoi aku ka paʻakikī o ka loaʻa ʻana o ka Juvenile Systemic Scleroderma? Pehea ka maʻamau?

ʻO kēia maʻi i kapa ʻia ʻo Juvenile Systemic Scleroderma hiki ke hoʻopilikia i kekahi o kēlā me kēia makahiki, me ka nānā ʻole i ke kāne. Eia nō naʻe, he mea kakaikahi loa ia no nā keiki ʻōpio, ʻo ia hoʻi, nā keiki ma lalo o 10 makahiki, ke loaʻa iā ia. ʻO ka huaʻōlelo 'juvenile' ponoʻī ke ʻano he maʻi kēia e hoʻopilikia ai i nā keiki. Inā ʻoe e nānā i nā helu helu ma kahi ʻāina e like me ʻAmelika Hui Pū ʻIa, ua ʻōlelo ʻia aia ma waena o 5,000 a me 7,000 mau keiki me Scleroderma. Ma kahi o 2% o ka heluna kanaka holoʻokoʻa me Scleroderma i hoʻopilikia ʻia e kēia maʻi ma mua o 10 makahiki. ʻO kekahi 7% e kū nei i kēia maʻi ma waena o 10 a me 19 mau makahiki. No laila, ua manaʻo ʻia kēia he maʻi kakaikahi loa .

He aha nā hōʻailona o ka Juvenile Systemic Scleroderma?

I kēia kūlana, hiki i nā hōʻailona ke hoʻopilikia i ka ʻili o ke keiki a me nā ʻōpū o loko. Eia kekahi, nui nā keiki me Systemic Scleroderma e ʻike pū i kahi kūlana i kapa ʻia ʻo Raynaud's phenomenon .

Nā hōʻailona e pili ana i ka ʻili a me nā ʻiʻo

ʻO ka mea mua, e nānā kākou pehea e pili ai kēia i ka ʻili a me nā ʻiʻo pili:

• Ua nalowale ka elasticity o ka ʻili. Lilo ia i ʻoʻoleʻa, paʻa, a maikaʻi ʻole ke nānā aku.
• E emi ana ka hana a nā lima. Lilo ka ʻili i paʻa, ʻoiai ma nā manamana lima a me nā poho lima, e paʻakikī ai ke kulou i nā lima a hopu i nā mea.
• ʻIke ʻia nā kīʻaha koko ʻulaʻula ma ka ʻili, ʻoi aku hoʻi ma nā lima, ka maka, a puni nā kui (telangiectasias). Hiki i kēia ke like me nā ʻupena nananana liʻiliʻi.
• ʻO Calcinosis ka hoʻokumu ʻia ʻana o nā puʻupuʻu liʻiliʻi o nā waihona calcium ma lalo o ka ʻili a i ʻole ma kahi ʻē aʻe. Hiki i kēia ke paʻakikī i kekahi manawa.

I ka wā mua, ʻike ʻia paha ka ʻili ma nā lima a me nā wāwae he pehu a hoʻonui ʻia. I ka hala ʻana o ka manawa, e paʻa paha ka ʻili o ke keiki, mānoanoa, a loaʻa paha nā wrinkles, nā wahi i piholo, a i ʻole nā ​​lua liʻiliʻi. No ka laʻana, e pehu paha nā manamana lima o kekahi mau keiki e like me nā sausage, a laila e paʻakikī a ʻālohilohi.

Nā hōʻailona e pili ana i nā ʻōpū o loko

Hiki i ka Systemic Scleroderma ke hoʻopilikia i nā ʻōpū o loko o ke keiki. Hiki i nā hōʻailona ke komo pū me:

• Pehu, ʻoʻoleʻa, a me ka ʻeha o nā hono. E like me ka rumatika.
• Nā ʻeha ma nā manamana lima. He lōʻihi ka manawa e ho'ōla ai kēia mau ʻeha.
• Nā pilikia o ka ʻōnaehana hoʻoheheʻe. Eia kekahi laʻana, ka ʻeha puʻuwai, ka paʻakikī i ka moni ʻana, nā ʻōpala palupalu (diarrhea), a me nā ʻeha o ka ʻōpū.
• Nā pilikia hanu. Hiki iā ʻoe ke loaʻa i ka ʻū mau a i ʻole ka paʻakikī o ka hanu ʻana.
• Nā pilikia puʻupaʻa. Hiki i kēia ke hana i ke koko kiʻekiʻe (hypertension) .
• Luhi mau ka manaʻo. Luhi koke ʻoiai ma hope o ka hana ʻana i kahi mea liʻiliʻi.
• Ka nāwaliwali o nā ʻiʻo.

I ka hapa nui o ka manawa, ʻaʻole ʻeha kēia ʻano. No laila, ʻaʻole paha e ʻike kekahi mau keiki he Scleroderma ko lākou. ʻO ia ke kumu e pono ai i kahi keiki i ʻike ʻia me Systemic Sclerosis ke ʻike pinepine i ke kauka e nānā i ke koko kiʻekiʻe, nā māmā, nā puʻupaʻa, nā ʻōpū, a me nā pilikia o ka puʻuwai.

ʻO ka hanana o Raynaud

He hōʻailona kū hoʻokahi kēia. ʻO ka hanana ʻo Raynaud ka wā e loli ai ke kala o nā manamana lima a me nā manamana wāwae o ke keiki i ka wā e hōʻike ʻia ai i ke anu a i ʻole ke kaumaha. ʻO ka mua, lilo lākou i keʻokeʻo , a laila uliuli , a ʻulaʻula hope loa. He hōʻailona kēia e ʻike ʻia i nā pae mua o ka maʻi. I kekahi manawa hiki i kēia ke lilo i hōʻailona mua e loaʻa ana ka Systemic Sclerosis.

ʻO nā hōʻailona ʻē aʻe e hiki ke kū mai me ka hanana ʻo Raynaud:

• Manaʻo luhi i nā manawa a pau
• ʻEha hui
• Ka paʻakikī i ka ale ʻana i ka meaʻai
• ʻeha ka ʻōpū
• ʻO ka mumū o ka umauma
• Ka maʻi pākī
• Paʻakikī ka hanu ʻana

No ke aha e kū mai ai ka Juvenile Systemic Scleroderma?

ʻOiaʻiʻo, ʻaʻole i ʻike ʻia ke kumu kikoʻī o ka Juvenile Systemic Scleroderma . Eia nō naʻe, ua hōʻike ʻia nā noiʻi e hōʻino ana nā cell e hoʻopili ana i loko o ko mākou mau kīʻaha koko e hoʻoulu ai i nā cell pili i loko o ka ʻili, i kapa ʻia ʻo fibroblasts, e lilo i mea hana nui. ʻO kēia mau fibroblasts nā cell e hana ana i nā protein e like me ka collagen. No laila, ʻo nā hōʻailona o ka Systemic Scleroderma i hana ʻia e kēia hana nui ʻana o ka collagen.

No ke aha i paʻa ai ka ʻili o kahi pēpē?

I loko o ka Systemic Scleroderma, lilo ka ʻili i paʻa ma muli o ka nui o ka protein i kapa ʻia ʻo collagen i loko o nā ʻiʻo o ke keiki. E like me kā mākou i kūkākūkā ai ma mua, ʻo ka hana a ka ʻōnaehana pale ka pale ʻana i ke kino mai ka maʻi a me nā maʻi. Eia nō naʻe, i loko o kahi keiki me Scleroderma, pane nui ka ʻōnaehana pale a hoʻāʻo e pale i ke kino me kāna mau cell olakino ponoʻī - ʻo ia hoʻi, hoʻouka ia i kāna mau cell ponoʻī . ʻO ka hopena, hoʻomaka nā cell o ke keiki e hana i ka collagen nui loa. Hoʻokomo ʻia kēia collagen keu i loko o ka ʻili o ke keiki a me nā ʻōpū o loko, e hana ana i kahi ʻano paʻakikī a mānoanoa, e like me kahi ʻeha.

Pehea e ʻike ʻia ai ka Systemic Scleroderma?

E nānā ke kauka o kāu keiki i ka Systemic Scleroderma ma ka noʻonoʻo ʻana i kekahi mau kumu.

• Nā ʻōuli a me nā hōʻailona kino, e like me ka mānoanoa o ka ʻili a me nā loli i nā manamana lima.
• Nā loli kikoʻī i ka ʻili, e like me nā wahi mānoanoa, ko lākou nui, ke ʻano, a me ke kala.
• E hāʻawi ka mōʻaukala olakino piha a me ka hoʻokolokolo kino i ka ʻike e pili ana i nā maʻi ma mua o ke keiki a inā paha ua loaʻa i kekahi o ka ʻohana nā kūlana like.

He aha nā hoʻokolohua i hoʻohana ʻia e ʻike ai i ka systemic scleroderma?

Hana ʻia nā hoʻokolohua like ʻole e kāpae i nā kūlana ʻē aʻe e like me ka scleroderma, e hoʻoholo i ke ʻano o ka hana o ka scleroderma, a e hoʻoholo inā ua hoʻopilikia ʻia nā ʻōpū ʻē aʻe ma waho aʻe o ka ʻili. Hiki i nā hoʻokolohua no nā protein autoimmune ke hāʻawi i kahi manaʻo o ke ʻano o ka maʻi. He mea kākaʻikahi loa, hana nā kauka i kahi biopsy ʻili .

Eia kekahi mau hoʻokolohua hou aʻe no ka Systemic Scleroderma:

• Nā hoʻāʻo koko: E ana i nā pae protein autoimmune a me ka hana o nā puʻupaʻa.
• Nā hoʻāʻo X-ray: E nānā i nā loli i ka ʻili o ke keiki, nā iwi, a me nā ʻōpū o loko (e like me nā māmā a me nā ʻōpū).
• Nā hoʻāʻo e nānā i ke kaʻina hana moni ʻana i loko o ka esophagus: ʻO ke ʻano kēia o ka nānā ʻana i ka hana o ka ʻōmole e lawe ana i ka meaʻai mai ka waha a i ka ʻōpū.
• Hoʻāʻo hana puʻuwai: He hoʻāʻo hanu e ʻike ai inā e hana pono ana nā māmā o ke keiki.
• ʻO ke kani ultrasound o ka puʻuwai (Echocardiography): E nānā pehea e hana ai ka puʻuwai o kāu pēpē.

ʻO wai ka mea e ʻike i ka Juvenile System Scleroderma?

Hoʻomaopopo ʻia, nānā ʻia, a mālama ʻia ka Systemic Scleroderma e ke kauka lapaʻau o kāu keiki, kahi rheumatologist i loea i kēia mau kūlana, kahi dermatologist , a i ʻole kahi hui o nā kauka i loea i nā ʻāpana kikoʻī o ke kino (ʻōnaehana hoʻoheheʻe, puʻuwai, māmā, puʻupaʻa).

Pehea e mālama ʻia ai ka Juvenile System Scleroderma?

ʻO nā pahuhopu nui o ka mālama ʻana i ka scleroderma systemic ka hoʻōki ʻana i ka mumū, pale i ka hoʻonui ʻia ʻana o ke kūlana, a pale i ka hōʻino ʻana i nā kino o loko.

Ke pale nei i ka ʻili

ʻO ka pale ʻana i kou ʻili e kōkua i ka hoʻonui ʻana i ke kahe koko i kou ʻili a me nā lālā. He mea nui loa kēia no nā keiki me ka maʻi Raynaud . Eia kekahi mau mea hiki iā ʻoe ke hana e pale i ka ʻili o kāu keiki:

• Mai hōʻeha i nā wahi i hoʻopilikia ʻia, ʻoiai hoʻi nā manamana lima a me nā manamana wāwae.ʻOiai he haehae liʻiliʻi hiki ke lilo i pilikia nui.
• E pale i nā lima a me nā wāwae o kāu keiki mai ke anu. E mālama i ka lumi mehana. I ka hoʻoilo (ma nā wahi anuanu e like me nā ʻāina mauna o ko mākou ʻāina), e ʻaʻahu i kāu keiki i kahi papa lole keu, e like me ka pāpale me nā pale pepeiao, nā mittens, a me nā socks mahana. ʻOi aku ka mehana o ka hulu hipa ma mua o ka pulupulu a i ʻole nā ​​​​lole synthetic. Eia kekahi, ʻoi aku ka maikaʻi o ke komo ʻana i kekahi mau papa lole lahilahi ma mua o hoʻokahi papa mānoanoa.
• E pale i ka puhipaka a i ʻole e hōʻike i kāu pēpē i ka puhipaka.
• Mai hāʻawi i kāu keiki i nā lāʻau anu i loaʻa ka pseudoephedrine.
• E pale i kāu keiki mai ka nui o ka lā. E hoʻohana i nā pale lā e like me ka ʻōlelo a kāu kauka.
• Mai hoʻohana i nā kopa ʻino, nā mea holoi (astringents, nā mea holoi kino a maka paha, nā mea holoi ʻino) ma ka ʻili o kāu keiki.
• E hoʻohana i nā lotion e mālama i ka ʻili o kāu keiki i laumania e like me ke kauoha a ke kauka.

Hoʻōla kino

ʻO nā papahana hoʻoikaika kino maʻamau a me nā papahana hoʻoikaika kino alakaʻi, i hana ʻia e nā mea hoʻoponopono kino a me nā mea hoʻoponopono hana, hiki ke kōkua i ka mālama ʻana i ka maʻalahi o ke keiki, ka laulā o ka neʻe ʻana i nā hono, ka ikaika o nā ʻiʻo, a me ke kahe koko i nā wahi i hoʻopilikia ʻia. Hiki i kēia mau lāʻau lapaʻau ke kōkua i ka pale ʻana i nā ʻaelike hui, ʻo ia hoʻi ka ʻoʻoleʻa ʻana o nā hono. Inā pono, hiki i ke kauka ke ʻōlelo aku i nā splints a i ʻole nā ​​​​braces.

ʻoki kino

He mea kākaʻikahi loa, pono paha ke ʻoki lima orthopedic a i ʻole ke ʻoki hoʻonaninani e hoʻoponopono i nā kīnā koʻikoʻi o ke hono a i ʻole ka ʻili a i ʻole nā ​​​​​​palapala. Eia nō naʻe, ma mua o ke ʻoki ʻana, pono ke kūlana i ka hoʻomaha ʻana , ʻo ia hoʻi, ua hana ʻole ia no kekahi mau makahiki.

E noʻonoʻo paha ke kauka o kāu keiki i ka hoʻoili ʻana o ka iwi iwi autologous ma ke ʻano he koho lapaʻau. Ke noiʻi ʻia nei nā lāʻau lapaʻau ʻē aʻe i kēia manawa.

He aha nā lāʻau lapaʻau i hāʻawi ʻia no ka Systemic Scleroderma?

Hiki i kāu kauka ke kuhikuhi i nā lāʻau lapaʻau like ʻole e mālama ai i ke kūlana o kāu keiki. Eia kekahi laʻana:

• Corticosteroids: Hoʻēmi i ka mumū i nā ʻiʻo, nā hono, a me ka ʻili. Hiki i nā Steroids ke kōkua i ka mālama ʻana i nā pae mua o ka mumū i loko o nā ʻōpū o loko. Eia nō naʻe, ʻaʻole maikaʻi loa nā steroids i nā pae fibrotic hope o ka sclerosis systemic.
• Nā lāʻau anti-inflammatory non-steroidal (NSAIDs): No ka laʻana , ibuprofen a me naproxenHoʻohana ʻia nā lāʻau lapaʻau e like me NSAID i kekahi manawa e hōʻemi i ka mumū o nā hono i nā keiki me ka arthritis. Eia nō naʻe, pono e akahele ʻaʻole e hoʻohana nui i nā NSAID ke pilikia ka hana o nā puʻupaʻa.
• ʻO nā lāʻau lapaʻau modulator immune ʻē aʻe: Hāʻawi ʻia kēia mau mea e hōʻemi i ka pane autoimmune a pale i ka mumū a me ka scarring ma hope.
• Nā lāʻau lapaʻau e hoʻonui ai i nā kīʻaha koko a hoʻomaikaʻi i ke kahe koko: Hoʻohana ʻia kēia mau mea e mālama i ka hanana ʻo Raynaud .

Inā loaʻa i kaʻu keiki ka Systemic Scleroderma, he aha kaʻu e manaʻo ai?

ʻAʻohe lāʻau lapaʻau kūikawā no ka scleroderma. Eia nō naʻe, hiki iā ʻoe ke kōkua i kāu keiki e mālama i ke kūlana a ola me ia.

He maʻi mau loa ka Systemic Scleroderma, lōʻihi, a lohi ka holomua. Hiki iā ia ke mau no nā mahina a i ʻole nā ​​​​makahiki. Aia ke ʻano o kāu keiki i ka laha ʻana o nā hōʻailona a me ka nui o ke kino (ʻoi aku ka ʻili a me nā ʻōpū o loko) i hoʻopilikia ʻia.

ʻOi aku ka nui o ka pilikia o nā keiki me nā pilikia māmā, puʻuwai, a i ʻole nā ​​puʻupaʻa i nā pilikia, e like me nā ʻūmiʻi hui a me nā loli hoʻonaninani. Hiki i kēia kūlana ke hoʻopilikia i ka ulu ʻana o ka iwi o ke keiki.

ʻAʻole pinepine e nalowale loa ka Systemic Scleroderma, akā hiki ke noho ma ka pae like no kekahi mau makahiki me ka ʻole e lilo i mea ʻino.

ʻEhia ka lōʻihi e hiki ai iā ʻoe ke ola me ka Juvenile Systemic Scleroderma?

ʻOkoʻa ke ola o ke keiki i loaʻa i ka Systemic Scleroderma ma muli o ke koʻikoʻi o ke kūlana, ʻoiai inā ua hoʻopilikia ia i ko lākou mau kino o loko. He mea nui e kamaʻilio me kāu kauka e pili ana i kēia e loaʻa ai kahi ʻike maopopo.

Hiki ke pale ʻia ka Juvenile System Scleroderma?

ʻOiai ʻaʻole ʻike ʻia ke kumu kikoʻī, ʻaʻohe ala kikoʻī e pale aku ai i ka Systemic Scleroderma.

Pehea e mālama ai i kaʻu keiki i loaʻa i ka Systemic Scleroderma?

Pono nā keiki me ka Systemic Scleroderma e ola maʻamau i kahi ola e like me ka hiki. Pono lākou e hele i ke kula, pāʻani, a komo i nā hana. Ma keʻano laulā, ʻaʻohe palena i ka nui o ka hana kino e hiki i nā keiki ke hana (inā palekana). Kōkua ka hoʻoikaika kino i ka pale ʻana i ka nāwaliwali a hoʻonui i ka ikaika o nā ʻiʻo, ka maʻalahi, a me ke ahonui.

Āhea wau e lawe ai i kaʻu keiki i ke kauka?

Pono e lawe ʻia kāu keiki no nā nānā maʻamau. E makaʻala pono i nā hōʻailona e hoʻopilikia i nā ʻōpū o loko. Inā ʻeha nui kāu keiki, paʻakikī ke hoʻoneʻe i nā ʻāpana o ko lākou kino, a i ʻole he mau hōʻailona e hoʻopilikia ana i ko lākou ola o kēlā me kēia lā,E ʻike koke i ke kauka.

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

ʻO ke nīnau ʻana i nā nīnau e like me kēia e kōkua iā ʻoe:

• Pehea ke koʻikoʻi o ke kūlana o kaʻu keiki?
• Pehea e hiki ai iaʻu ke kōkua i ka pale ʻana i ka ʻili o kaʻu keiki ma ka home?
• ʻEhia pinepine e hele ai kaʻu keiki i ka hoʻoikaika kino?
• He aha nā hōʻailona e pono iaʻu e makaʻala inā e ʻoi aku ka ʻino o ka maʻi?
• Pono anei kaʻu keiki i ke ʻoki kino?

Aia kekahi mau ʻano ʻē aʻe o ka scleroderma?

Ma waho aʻe o nā ʻano o ka Systemic Scleroderma, aia ʻelua mau ʻano nui o Scleroderma. ʻO lākou kēia:

• ʻO ka scleroderma kūloko: Hoʻopilikia wale kēia ʻano i ka ʻili ma kekahi mau wahi o ke kino. Hiki ke pālahalaha aku i nā ʻiʻo a i ʻole nā ​​​​iwi ma lalo, a i ʻole ʻaʻohe paha. Kākaʻikahi ka hoʻopilikia ʻana i nā ʻōpū o loko.
• ʻO ka scleroderma systemic (i ʻike ʻia hoʻi he sclerosis systemic): ʻO kēia ka mea a mākou i kamaʻilio ai ma kēia ʻatikala. Ma kēia kūlana, hiki i ka ʻili ke mānoanoa ma nā wahi āpau o ke kino. Ma waho aʻe o nā loli ʻili, hiki ke ulu ka ʻiʻo ʻeha i loko o nā ʻōpū o loko e like me nā puʻupaʻa, ka puʻuwai, nā māmā, a me ka ʻōnaehana gastrointestinal. Hiki i nā keiki me ka sclerosis systemic ke kaupalena ʻia ka neʻe ʻana o nā hono ma muli o nā loli ʻili ākea.

ʻO nā mea nui e pono ai ʻoe e hoʻomanaʻo ma kēia ʻatikala

He maʻi laha ʻole ka Juvenile Systemic Scleroderma i nā keiki e hoʻomānoanoa a paʻakikī ai ka ʻili, i kekahi manawa e hoʻopilikia ana i nā ʻōpū o loko. He maʻi autoimmune ia.

• Nā Hōʻailona: ʻO ka ʻili e ʻūmiʻi ana, ka pehu ʻana o nā manamana lima, ka hanana ʻo Raynaud (ka loli ʻana o ke kala o nā manamana lima i ke anuanu), ʻeha o nā hono, nā pilikia o ka ʻōpū, a me ka paʻakikī o ka hanu ʻana.
• Kumu: ʻOiai ʻaʻole maopopo loa, ua manaʻo ʻia ua hana ʻia e kahi ʻōnaehana pale maikaʻi ʻole a me ka hana ʻana o ka collagen nui.
• Lapaʻau: E kāohi i ka maʻi, e pale i ka ʻili, e hoʻohana i ka lāʻau lapaʻau kino a, inā pono, nā lāʻau lapaʻau. ʻOiai ʻaʻohe lāʻau lapaʻau piha, hiki ke mālama ʻia nā hōʻailona.
• ʻO ka mea nui loa: Inā loaʻa i kāu keiki nā hōʻailona, ​​e ʻimi koke i ke kōkua lapaʻau. He mea nui loa e kuhikuhi i kāu keiki no nā nānā lapaʻau maʻamau a kōkua iā lākou e ola i kahi ola maʻamau. Mai hopohopo, hiki iā ʻoe ke kū i kēia kūlana me ke kōkua o nā kauka.

ʻO Scleroderma, nā maʻi ʻili o nā keiki, ka hoʻopaʻa ʻana i ka ʻili, collagen, nā maʻi autoimmune, ka hanana Raynaud, ka maʻi CREST