Koko a ɛtaa yɛ den, mu duru a ɛnkɔ soro... So eyi yɛ Cystic Fibrosis (CF)? Momma yɛnhwɛ eyi yiye.

So wo ba kumaa no hwene mu yɛ den bere nyinaa? Ɛmfa ho aduan dodow a wɔde ma no, wɔyɛ teateaa a wonhu mpo? So ɛtɔ mmere bi a ɛte sɛ nea ɛyɛ den ma wɔn sɛ wɔbɛhome? Ɛyɛ ade a ɛfata sɛ awofo bɛte ehu nka bere a wohu saa sɛnkyerɛnne ahorow yi no. Ebia eyinom yɛ tebea bi a wɔfrɛ no Cystic Fibrosis (CF) ho sɛnkyerɛnne, a ebia yɛntee ho asɛm pii, nanso ɛho hia yiye sɛ yehu. Momma yɛnka eyi ho asɛm a yensuro na yɛnka nnɛ ara kwa.

Dɛn ankasa ne cystic fibrosis (CF)?

Sɛ yɛbɛka no tiawa a, eyi yɛ awosu mu yare a wonya fi awofo hɔ . Awosu mu abɔde titiriw bi wɔ hɔ a ɛhwɛ sɛnea nkyene (chloride) ne nsu fa yɛn nipadua mu nkwammoaa mu no so. Wɔfrɛ eyi CFTR (cystic fibrosis transmembrane conductance regulator) awosu mu abɔde . Enti, CF yare no ba bere a sintɔ anaa nsakrae bi wɔ saa awosu mu abɔde yi mu no.

Dɛn na ɛba esiane saa sintɔ yi nti? Mpɛn pii no, nsu a ɛwɔ yɛn nipadua mu te sɛ nsu ne akisikuru , yɛ teateaa na ɛyɛ hwerɛma. Nanso wɔ obi a ɔwɔ CF nipadua mu no, saa nsu a ɛba no yɛ den yiye, ɛyɛ den, na ɛyɛ nnam .

Susuw nea ɛba bere a saa nsu a ɛyɛ den yi boaboa ano wɔ ahurututu mu no ho hwɛ. Ɛma ɛyɛ den sɛ wɔbɛhome, ɛnyɛ den sɛ mmoawa bɛkyere , na nyarewa taa ba . Bere kɔ so no, eyi betumi asɛe ahurututu no kɛse, ɔhome a entumi nyɛ adwuma yiye, na owu mpo.

Afei nso, saa nsu a ɛyɛ den yi siw dwensɔtwaa no mu ntini ahorow no kwan. Afei enzymes a ɛboa ma yɛyam aduan a yedi no mfi adi . Ne saa nti, aduan pa a wonnya nni ne nyin a ɛyɛ mmerɛw ba. Bio nso, mmerɛbo mu yare, asikreyare (`Cystic Fibrosis-Related Diabetes` - CFRD) ne awo ho haw nso betumi aba.

Nanso mma ɛnhaw wo. Ɛnnɛ, esiane ayaresa a ɛkɔ akyiri nti, CF ayarefo nkwa nna akɔ soro mfe du du pii.

Dɛn ne yare yi ho sɛnkyerɛnne?

CF ho sɛnkyerɛnne betumi ayɛ soronko wɔ onipa biara ho. Ɛsono sɛnea yare no mu yɛ den nso. Momma yɛnhwɛ sɛnkyerɛnne atitiriw no.

Cystic fibrosis a ɛnyɛ nea wɔtaa yɛ

Eyi yɛ CF a ɛyɛ mmerɛw. Nsɛnkyerɛnne no da adi akyiri yi wɔ asetra mu. Ɛtɔ mmere bi a, akwaa biako pɛ na ɛka.

Dɛn na ɛde CF ba?

Sɛnea yɛadi kan aka ho asɛm no, awosu mu nkwaadɔm a wɔfrɛ no CFTR no sintɔ bi na ɛde eyi ba. Sɛ abofra betumi anya saa yare yi a, ɛsɛ sɛ abofra no nya awosu mu abɔde a asɛe no bi fi ɛna no ne agya no nyinaa hɔ .

Ɔkwan bɛn so na wohu yare no?

Ɛho hia yiye sɛ wobehu saa yare yi ntɛm, efisɛ afei wobetumi afi ayaresa ase ntɛm na wɔatew nsɛnnennen a ebetumi aba daakye no so. Wɔ Sri Lanka no, mprempren ayaresabea ahorow bi resɔ mmofra ahwɛ sɛ ebia eyi te wɔ awo mu.

Nhwehwɛmu titiriw a wɔde hu yare no ne:

• Fifiri ho nhwehwɛmu: Eyi ne sɔhwɛ a wotumi de ho to so sen biara a wɔde hu CF.Saa sɔhwɛ a ɛyaw nnim yi susuw nkyene (chloride) dodow a ɛwɔ wo fifiri mu. Sɛ dodow no dɔɔso sen sɛnea ɛte daa a, ɛyɛ CF ho sɛnkyerɛnne.
• Mogya mu nhwehwɛmu: Eyi sɔ nnuru bi a wɔfrɛ no `Immunoreactive Trypsinogen (IRT)` dodow a ɛwɔ mogya no mu hwɛ. Saa dodow yi dɔɔso wɔ CF ayarefo mu.
• Awosu mu nhwehwɛmu (DNA sɔhwɛ): Eyi hwɛ tẽẽ sɛ ebia sintɔ ahorow bi wɔ `CFTR` awosu mu abɔde no mu anaa.

Wɔ nhwehwɛmu ahorow yi akyi no, ebia wo duruyɛfo bɛkamfo nhwehwɛmu afoforo akyerɛ de akyerɛ sɛ woahu yare no na wahwehwɛ nsɛnnennen. Sɛ nhwɛso no, koko X-ray, ahurututu mu dwumadi ho nhwehwɛmu (PFTs), ne ahurututu ne nsu mu nhwehwɛmu.

Dɛn ne ayaresa ahorow no?

Esiane sɛ CF yɛ yare a emu yɛ den nti, animdefo kuw bi a wɔyɛ adwuma ahorow pii, a ahurututu ho ɔbenfo, nipadua mu ayaresa ho ɔbenfo, ne aduannuru ho ɔbenfo ka ho na wɔde sa yare. Botae atitiriw a ɛwɔ ayaresa mu ne sɛ ɛbɛma ahurututu mu nsu afi mu, asiw ɔyare mmoawa ano, na ama wɔanya aduannuru a ɛho hia.

Nnuru a wɔde di dwuma

Ebia wo duruyɛfo bɛkyerɛw nnuru te sɛ:

• Nnuru a ekum ɔyare mmoawa: Siw ahurututu mu nyarewa ano na sa.
• Nnuru a ɛma nsu no yɛ mmerɛw: Wɔnam afiri a wɔde home anaa nebulizer so na ɛde eyinom ma. Wɔboa ma nsu a ɛyɛ den no yɛ mmerɛw na ɛma ɛyɛ mmerɛw sɛ wobɛfefe.
• Bronchodilators: Ɛtrɛw mframa kwan no mu na ɛma home yɛ mmerɛw.
• Pancreatic enzyme supplements: Ɛsɛ sɛ wɔnom eyinom ka aduan ne nnuan biara ho. Wɔboa ma wɔyam aduan na wɔtwe aduannuru.
• CFTR modulators: Eyinom ne nnuru kuw foforo a etu mpɔn sen biara. Saa nnuru yi boa ma `CFTR` protein a asɛe a ɛde yare no ba tẽẽ no yɛ adwuma bio. Eyi betumi ama nsu a ɛyɛ nwini no ayɛ mmerɛw, ama ahurututu no ayɛ adwuma yiye, atew ɔfe so, na mpo atew ne mu duru so. `(Trikafta, Kalydeco, Orkambi)` yɛ nnuru ahorow yi bi.

Mfiri a Wɔde Fi Mframa Mu (ACT) .

Eyinom yɛ nneɛma a ɛsɛ sɛ wɔyɛ da biara, anyɛ yiye koraa no mprenu da biara. Wɔboa ma nsu a ɛyɛ den a akɔhyɛ ahurututu no mu no yɛ mmerɛw na woyi fi hɔ.

• Koko mu apɔw-mu-teɛteɛ: Sɛ́ wɔbɛma obi abɔ akyi ne moma so wɔ ɔkwan a ɛyɛ dɛ so na ama nsu a ɛwɔ ne mu no ayɛ mmerɛw.
• Vest no: Eyi yɛ vest a wɔde abɔ afiri titiriw bi ho. Sɛ wɔhyɛ a, wosow a ɛwosow mpɛn pii no bɔ koko no, na ɛma adeyɛ bi ba na ɛma nsu a ɛwɔ mu no yɛ mmerɛw.
• PEP mfiri: Sɛ wohome denam mfiri nketewa te sɛ `(Flutter, Acapella)` so a, ɛma nhyɛso ba ahurututu no mu na ɛboa ma nsu a ɛwɔ mu no fi hɔ.

Oprehyɛn a wɔyɛ

Ebia nsɛnnennen bi bɛhwehwɛ sɛ wɔyɛ no oprehyɛn.

• Ahurututu a wɔde si ananmu: Ɔkwan a etwa to bere a yare no mu yɛ den yiye na ɛkame ayɛ sɛ ahurututu no ntumi nyɛ adwuma koraa no.
• Mmɛn a wɔde si ananmu: Sɛ mmerɛbo no asɛe kɛse a.
• Afoforo: Nneɛma te sɛ hwene mu ntini a ɛyɛ mmerɛw a wobeyi afi hɔ, afiri a wɔde ma aduan a wɔde bɛhyɛ yafunu no mu na ama wɔanya aduan.

Nsɛnnennen a ebetumi aba wɔ CF ho

Sɛ wɔansa CF yiye a, nsɛnnennen ahorow betumi aba.

• Ahurututu: Mframa kwan a ɛtrɛw daa (`Bronchiectasis`), ahurututu a ɛhwe ase (`Pneumothorax`), nyarewa a enni sabea.
• Pancreatitis: asikreyare a ɛfa CF ho (`CFRD`).
• Mmerɛbo: Mmerɛbo mu akuru (`Cirrhosis`).
• Intestinal: Intestinal siw, asiane a ɛkɔ soro sɛ wobenya kokoram wɔ akyi berɛmo mu.
• Awo nhyehyɛe: Mmarima a wontumi nwo ne mma a wɔkyɛ wɔ mmea mu.
• Nnompe: Nnompe a ɛyɛ mmerɛw (Osteoporosis).

Nsɛm a Wɔtaa Bisa (FAQs) .