So wunim Sickle Cell Anemia ho asɛm? Momma yɛnka ho asɛm!

So woate edin ‘Sickle Cell Anemia’ ho asɛm pɛn? Ebia saa din yi te sɛ nea ɛyɛ nwonwa kakra, anaasɛ ɛyɛ hu kakra mpo. Nanso ɛyɛ awosu mu tebea a ɛne yɛn mogya wɔ abusuabɔ. Sɛ yɛbɛka no tiawa a, nea ɛkɔ so wɔ eyi mu ne sɛ yɛn mogya mu nkwammoaa kɔkɔɔ, kyerɛ sɛ, nkwammoaa kɔkɔɔ a ɛwɔ mogya no mu no sesa wɔn nsusuwii. Te sɛ sickle (ɛno nti na wɔfrɛ no 'sickle'). Saa nsakrae yi betumi de akwahosan ho haw ahorow aba. Enti, so yɛbɛka eyi ho asɛm akɔ akyiri kakra nnɛ?

Dɛn ne Sickle Cell Anemia? Dɛn ankasa na ɛba?

Sickle cell anemia ne nea nnuruyɛfo frɛ no kuw kɛse a wɔfrɛ no ‘Sickle Cell Disease’ no fã a emu yɛ den sen biara . Eyi yɛ mogya mu yare a wonya fi awo mu, kyerɛ sɛ, mogya mu yare a wonya fi awo mu . Ade titiriw nti a ɛte saa ne awosu mu nsakrae. Esiane awosu mu nsakrae yi nti, mogya mu nkwammoaa kɔkɔɔ a wɔyɛ wɔ yɛn nipadua mu no ntaa nyɛ kurukuruwa, na mmom ɛkotow na ɛtrɛw te sɛ nkankyee (a ɛte sɛ nkyerɛwde C). Nnuruyɛfo nso frɛ eyinom "sickle cells".

Afei hwɛ, yɛn mogya mu nkwammoaa kɔkɔɔ a ɛte saa no yɛ kurukuruwa na ɛyɛ mmerɛw, enti ɛnyɛ den sɛ ebetumi afa yɛn mogya ntini a ɛyɛ mmerɛw no mu na ɛde mframa pa akɔ nipadua no fã biara, akwaa biara, ne ntini biara mu. Nanso mogya mu nkwammoaa kɔkɔɔ a ɛte sɛ nkankyee yi yɛ den na ɛyɛ nnam . Enti ɛnyɛ mmerɛw sɛ wɔbɛfa mogya ntini no mu, na mmom wɔtaa kɔhyɛ mmeae bi. Te sɛ kar akwan a ɛkyere so wɔ ɔkwan bi so. Ade foforo ne sɛ, saa ‘sickle’ nkwammoaa yi sɛe na wowuwu ntɛmntɛm sen mogya mu nkwammoaa kɔkɔɔ a ɛteɛ. Esiane eyinom nyinaa nti, mogya mu nkwammoaa kɔkɔɔ a ɛte apɔw a ɛwɔ wo nipadua mu no so tew, na ɛde mogya a ɛtɔ kɔ wo nipadua mu a emu yɛ den ba. Ɛne sɛ, mogya a wonnya.

Bere bi a atwam no, na nkokoaa a wɔwo wɔn a wɔwɔ saa yare yi no, na hokwan a ɛwɔ hɔ sɛ wobenya nkwa akosi mpanyin afe so no sua koraa. Nanso, esiane nkɔso a aba wɔ nnuruyɛ mu, ntɛm a wohu, ne ayaresa foforo nti , eyi asesa kɛse. Mprempren nnipa pii te ase ma wodi mfe 50 anaa nea ɛboro saa.

Saa yare yi abu so dɛn wɔ Sri Lanka? Hena na ɛda adi sɛ obenya bi?

Ɛyɛ den ankasa sɛ wubenya akontaabu a ɛfa yare yi ho wɔ Sri Lanka. Nanso sɛ wohwɛ wiase a, saa yare yi abu so titiriw wɔ nnipa a wofi Afrika, Europa Kesee Fam, Mfinimfini Apuei anaa Asia Indiafo abusua mu. Ɛno kyerɛ sɛ awosu mu abusuabɔ bi wɔ hɔ.

Dɛn ne sickle cell mogya a ɛtɔ kɔ nipadua mu ho sɛnkyerɛnne?

Saa yare yi ho sɛnkyerɛnne betumi ayɛ soronko wɔ onipa biara ho, nanso sɛnkyerɛnne ahorow bi wɔ hɔ a ɛtaa ba:

• Ɔbrɛ a mogya a ɛtɔ kɔ nipadua no mu ba: Sɛ tebea yi ba nkokoaa nkumaa so a, ebia wɔtaa su, wɔn ho nyɛ wɔn den, na wɔpow sɛ wɔbɛma wɔn nufu.
• Nyarewa a wɔtaa nya:Saa yare yi sɛe yɛn akyi berɛmo. Akisikuru yɛ yɛn nipadua mu ahoɔden a ɛko tia nyarewa no fã titiriw. Enti sɛ ɛyɛ mmerɛw a, hokwan kɛse wɔ hɔ sɛ obi benya nyarewa ne ɔyare mmoawa. Nanso, esiane nnuru a ekum ɔyare mmoawa ne nnuru a wɔde bɔ nkurɔfo ho ban a ɛwɔ hɔ mprempren nti, asiane yi so atew kɛse.
• Ɛyaw: Eyi yɛ yare yi ho sɛnkyerɛnne a ɛtaa ba na ɛyɛ awerɛhow no mu biako. Nipadua no mu ntini ahorow no nnya mframa pa a ɛdɔɔso, na ɛma ntini ahorow no sɛe. Saa ɔsɛe yi na ɛde ɛyaw ba. Mmeae a ɛtaa yɛ yaw ne nsa, nan, koko, ne akyi. Ɛtɔ mmere bi a, ebetumi afi ase sɛ ɛyaw kakra na ɛde nkakrankakra akɔ soro, anaasɛ ebetumi abɛyɛ ɛyaw a wontumi nnyina ano mpofirim.
• Nsa ne anan mu ahonhon a ɛyɛ yaw: Eyi yɛ sɛnkyerɛnne a edi kan a ɛkyerɛ sɛ mogya a ɛtɔ sickle cell wɔ akokoaa mu no mu biako. Ɔhonhon no ba efisɛ mogya mu nkwammoaa kɔkɔɔ a ɛte sɛ nkankyee no kɔhyɛ mogya ntini a ɛyɛ mmerɛw a ɛwɔ akokoaa no nsa ne ne nan mu no mu, na esiw mogya no kwan.
• Aniwa a ɛyɛ kɔkɔɔ ne honam ani a efi jaundice mu ba: Yɛn mmerɛbo na ɛhwɛ mogya mu nkwammoaa kɔkɔɔ mu. Wɔ sickle cell anemia mu no, ade bi a wɔfrɛ no bilirubin a efi sickle cells a ewu ntɛmntɛm mu no boaboa ano wɔ nipadua no mu, na ɛde jaundice ba.

Mpɛn pii no saa sɛnkyerɛnne ahorow yi fi ase da adi bere a akokoaa no adi bɛyɛ asram 6 kosi 9 no . Bere kɔ so no, bere a nkwammoaa a ɛnyɛ ne kwan so (a ɛyɛ hu) a ɛwɔ nipadua no mu no kɔ soro no, sɛnkyerɛnne ahorow no betumi asesa na ayɛ kɛse.

Dɛn nti na mogya a ɛtɔ kɔ nipadua mu wɔ sickle cell mu ba? Dɛn na ɛde ba?

Sickle cell anemia fi awosu mu nsakrae a ɛba yɛn awosu mu nkwaadɔm mu. Ne titiriw no, awosu mu abɔde bi wɔ hɔ a wɔfrɛ no HBB awosu mu abɔde. Saa awosu mu abɔde yi kyerɛ yɛn sɛ yɛnyɛ protein bi a wɔfrɛ no beta-globin, a ɛyɛ yɛn hemoglobin no fã. Sɛnea wunim no, hemoglobin ne ade a ɛho hia sen biara a ɛboa yɛn mogya mu nkwammoaa kɔkɔɔ ma ɛde mframa pa kɔ.

Enti, sɛ wubenya sickle cell anemia a, ɛsɛ sɛ wunya awosu mu abɔde koro no ara a wɔasakra no fi wo maame ne wo papa nyinaa hɔ . Ɛtɔ mmere bi a, sɛ wunya awosu mu nkwaadɔm abien a wɔasesa fi awofo baanu no nyinaa hɔ a, wubetumi anya sickle cell yare afoforo a ebia ɛnyɛ den pii. Nnuruyɛfo frɛ eyinom ‘awosu mu nkwaadɔm mu nsakrae ahorow’.

Nsɛnnennen bɛn na ebetumi aba esiane tebea yi nti?

Sickle cell anemia betumi de nsɛnnennen a emu yɛ den aba, ɛtɔ mmere bi a ɛde nkwa to asiane mu . Sɛ nhwɛso no, nnipa a wɔwɔ saa yare yi taa hia ayaresa a egye ntɛmpɛ na wɔde wɔn kɔ ayaresabea, titiriw wɔ tebea horow a wɔfrɛ no acute chest syndrome (ACS) ne vaso-occlusive crisis (VOC) ho.

Nsɛnnennen afoforo nso wɔ hɔ:

• Asaabo mu yare a enni sabea: Saa tebea yi betumi aba bere a asaabo no nnya mframa pa a ɛdɔɔso, na ɛma ntini no sɛe.
• Retina a atew ne ho: Sɛ sickle cells siw mogya ntini a ɛwɔ aniwa no mu no kwan a, eyi betumi aba.
• Priapism (painful erection): Tebea a mogya ntini a ɛwɔ ɔbarima no akyi a esiw ba.
• Splenic sequestration: Sɛ sickle cells kyere wɔ spleen no mu na esiw mogya no kwan a, eyi betumi ama mogya atɔ nipadua no mu mpofirim a emu yɛ den.
• Akisikuru: Obiara a mogya atɔ no wɔ sickle cell, mmofra nkumaa mpo (mmofra akisikuru ), wɔ asiane mu.

Dɛn ne Acute Chest Syndrome (ACS) a Ɛyɛ Fɛ?

Eyi ne ɔhaw a ɛtaa ba wɔ sickle cell anemia mu. Ɛsan nso ne ade titiriw a ɛde owu ba ne nea ɛto so abien a ɛde ayaresabea kɔ ayaresabea. Eyi ba bere a sickle cells boaboa ano na esiw mogya ntini a ɛwɔ ahurututu no mu no ano no. Nsɛnkyerɛnne no bi ne:

• Koko mu yaw a ɛba mpofirim.
• Ɛwa.
• Huraeɛ.
• Ɔhome a ɛyɛ den.

Dɛn ne Vaso-occlusive Crisis (VOC) a ɛma mogya tu?

Eyi ne bere a sickle cells siw mogya ntini ahorow no. Nnuruyɛfo nso frɛ eyi “ɛyaw a emu yɛ den.” Wɔ VOC mu no, ɛyaw a wontumi nnyina ano betumi aba wɔ nsa, nan, akyi, ne yafunu mu.

Ɛtɔ mmere bi a nnuruyɛfo frɛ VOC ahorow sɛ "yare a aniwa nhu." Efisɛ, mpɛn pii no, nea ɛkyerɛ ara ne ɛyaw. Nsɛnkyerɛnne biara nni hɔ a ɛkyerɛ sɛ woapira anaa yare foforo bi. Ɛyɛ yaw ara kwa.

Ayaresa titiriw a wɔde sa ɛyaw a emu yɛ den yi ne opioid nnuru a wɔde kum ɛyaw. Nanso, nhwehwɛmu ahorow bi ada no adi sɛ opioid a wɔhwehwɛ yi betumi ama nnipa a wɔwɔ sickle cell anemia no atew wɔn ho afi afoforo ho, na ɛno betumi ama wɔanya adwenemhaw ne dadwen. Eyi yɛ asɛnnennen foforo a ɛsɛ sɛ wohyia bere a wo ne yare yi te ase no.

Ɔkwan bɛn so na wohu yare yi? (Nyare a Wɔahu) .

Nnuruyɛfo hu sɛ wowɔ sickle cell anemia denam wo mu nhwehwɛmu a wodi kan yɛ so. Ebia wɔbɛte wo dwonku anaa wo mmerɛbo nka. Wobebisa wo yare no ho sɛnkyerɛnne, titiriw ɛyaw a ɛwɔ wo nsa ne wo nan mu, ne wo yafunu ho asɛm. Wɔbɛbisa wo nyarewa a atwam ne sɛ ebia woanya ɔyareɛ bi nso. Afei ebia wɔbɛyɛ sɔhwɛ ahorow te sɛ:

• Mogya Dodow a Edi Mu (CBC): Eyi hwehwɛ sɛ wɔyɛ nhwehwɛmu pii a wɔhwɛ wo mogya mu nkwammoaa kɔkɔɔ no pɔtee.
• Hemoglobin electrophoresis: Wɔsan frɛ no high-performance liquid chromatography, sɔhwɛ yi hwehwɛ wo hemoglobin mu de hu hemoglobin a ɛnyɛ ne kwan so a ɛde sickle cell mogyatɔw ba no na ɛsusuw.
• Awosu mu nhwehwɛmu: Ebia wo duruyɛfo bɛhyɛ sɛ wɔnyɛ nhwehwɛmu yi na ama woahu sɛ wowɔ awosu mu nsakrae a ɛde sickle cell mogyatɔw ba no anaa.

Dɛn ne ayaresa ahorow a wɔde sa eyi? So wobetumi asa no yare?

Sickle cell anemia ayaresa gyina wo yare no ho sɛnkyerɛnne ne w’akwahosan nyinaa so. Sɛ nhwɛso no, sɛ wowɔ nsɛnnennen a emu yɛ den te sɛ acute chest syndrome, ɛyaw a emu yɛ den a ɛtaa ba, anaasɛ wowɔ tebea bi te sɛ obubuafo a, ebia wo duruyɛfo bɛkamfo akyerɛ sɛ wɔmfa allogeneic stem cell nsi ananmu. Mprempren eyi nkutoo ne ɔkwan a wɔfa so sa sickle cell anemia koraa .

Ayaresa afoforo ne:

• Mogya a wɔde ma.
• Nnuru a ekum ɔyare mmoawa a wɔde sa ɔyare mmoawa.
• Nnuru a ɛma yare no ho sɛnkyerɛnne pɔtee bi fi hɔ. Ebi ne:
• Hydroxyurea: Eyi yɛ aduru a wɔde ko tia kokoram. Wɔde di dwuma wɔ nkokoaa a wɔadi fi asram 6-9, mmofra, ne mpanyimfo mu. Ebetumi atew nsɛnnennen a emu yɛ den a ɛba no so na ɛtew mogya a ɛtɔ kɔ nipadua mu ho sɛnkyerɛnne so.
• Voxelotor: Eyi mma mogya mu nkwammoaa kɔkɔɔ no ntumi dannan sickle cells. Wɔde ma mmofra a wɔadi boro mfe 4.
• L-glutamine ayaresa: Saa aduru yi a wɔde ma mmofra a wɔadi boro mfe 5 ne mpanyimfo no mma sickle cells ntumi nyɛ nea ɛnteɛ kɛse.
• Crizanlizumab-tmca: Eyi brɛ VOC/ɛyaw a emu yɛ den a ɛtaa ba no ase. Wɔde ma nnipa a wɔadi boro mfe 16.

Sɛ mewɔ sickle cell anemia a, m’asetra bɛyɛ dɛn?

Wɔ nnipa pii fam no, sickle cell anemia yɛ yare a enni sabea . Eyi kyerɛ sɛ wubehia ayaresa ne mmoa wɔ w’asetra nyinaa mu. Nsɛnkyerɛnne no betumi ayɛ nea emu nyɛ den ama ebinom, nea ɛkɔ fam wɔ afoforo fam, na emu yɛ den araa ma ɛde afoforo nkwa to asiane mu. Ɛsono obiara tebea. Enti wo ne wo duruyɛfo nkasa mfa nea wobɛhwɛ kwan. Onim w’akwahosan yiye ne sɛnea yare no bɛka wo.

So tebea yi mu yɛ den bere a worenyin no?

Yiw, bere a yɛrenyin no, akwahosan ho haw afoforo a ebia emu yɛ den kɛse betumi asɔre esiane oxygen a wɔmfa nkɔ akwaa ne ntini ahorow mu sɛnea ɛsɛ nti. Nnipa a wɔwɔ sickle cell anemia no wɔ asiane kɛse mu sɛ wobebubu, ahurututu, asaabo, akyi berɛmo, ne mmerɛbo asɛe.

Sɛ wɔkyekyem pɛpɛɛpɛ a, obi a ɔwɔ saa yare yi nkwa nna yɛ dɛn?

Mprempren nneɛma ayɛ yiye koraa sen sɛnea na ɛte kan no. Sɛ wohu ntɛm na wɔsa wɔn yare de tew nsɛnnennen so a , nnipa a wɔwɔ sickle cell anemia betumi atra ase akodu wɔn mfe 50 mu. Nnipa binom tra ase kyɛ mpo. Sɛ wowɔ nsɛmmisa bi fa eyi ho a, wo ne wo duruyɛfo nkasa. Obetumi akyerɛkyerɛ mu akyerɛ wo.

So ɔkwan bi wɔ hɔ a wɔbɛfa so asiw yare yi ano?

Sickle cell anemia yɛ yare a wonya fi awo mu, enti wontumi nsiw ano.. Nanso, wubetumi ayɛ wo mogya mu nhwehwɛmu ahwɛ sɛ wowɔ awosu mu nsakrae a ɛde sickle cell mogyatɔw ba no anaa. Wɔ aman a wɔanya nkɔso pii mu no, wɔyɛ akokoaa biara nhwehwɛmu wɔ yare no mu bere a wɔawo no. Ade a ɛho hia sen biara ne sɛ wubehu yare no ntɛm na woafi ase sa yare .

Mɛyɛ dɛn atumi atra ase yiye wɔ saa yare yi ho? (Ne ho a wɔhwɛ) .

Ayaresa foforo ama nnipa a wɔwɔ sickle cell anemia atra ase yiye koraa. Sɛ wowɔ yare no a, susuw nneɛma yi ho:

• Hwehwɛ aduruyɛ mu ayaresa titiriw: Ɛho hia sɛ wohwehwɛ ayaresa fi mogya ho animdefo kuw bi hɔ.
• Kɔ aduruyɛ mu nhwehwɛmu daa: Sɛ wo ne w’abusua oduruyɛfo nya abusuabɔ pa na wokɔ kɔhwɛ wo daa a, ebetumi aboa ma woasiw nsɛnnennen a emu yɛ den ano.
• Susuw ɛyaw ano aduru ho: Ɛyaw yɛ yare yi fã a abu so. Hwehwɛ afotu fi ɛyaw ano aduru ho ɔbenfo hɔ.
• Nya adwenemyare ho mmoa: Ɛtɔ mmere bi a, yare yi betumi ama woate nka sɛ wɔatew ne ho, adwenemhaw, ne dadwen. Sɛ wote nka saa a, wo ne oduruyɛfo nkasa.
• Bɔ wo ho ban fi nyarewa ho: Wo ne wo duruyɛfo nkasa mfa nnuru a wɔde bɔ wo ho ban ho. Fa nneɛma bi bɔ wo ho ban fi nyarewa ho.
• Ma w’adwene si nneɛma a atwa wo ho ahyia no so: Ɛho hia yiye sɛ nnipa a wɔwɔ sickle cell anemia no ma wɔn nipadua mu hyew kari pɛ. Twe wo ho fi mmeae a ɔhyew ne awɔw wom kɛse.
• Hwɛ nnuruyɛ mu sɔhwɛ ahorow mu: Nnuruyɛfo ne nhwehwɛmufo resɔ ayaresa foforo ahwɛ bere nyinaa. Ebia wubenya hokwan de wo ho ahyɛ biako mu.

Bere bɛn na ɛsɛ sɛ mekɔ oduruyɛfo nkyɛn?

Sɛ wote nka sɛ wo yare no ho sɛnkyerɛnne no reyɛ kɛse, anaasɛ wunya sɛnkyerɛnne foforo a, kɔ oduruyɛfo nkyɛn ntɛm ara .

Bere bɛn na ɛsɛ sɛ wokɔ Emergency Room?

Sickle cell anemia betumi de aduruyɛ mu tebea horow a emu yɛ den aba. Sɛ wowɔ saa sɛnkyerɛnne yi bi a, kɔ baabi a wɔhwɛ wɔn a wɔwɔ yare a egye ntɛmpɛ ntɛm ara :

• mogya a ɛtɔ kɔ nipadua mu ho sɛnkyerɛnne (ɔbrɛ kɛse, ahome a ɛyɛ tiaa, koma a ɛbɔ a ɛnteɛ).
• Atiridiinini a ɛboro digrii Celsius 38.5 (101.3 Fahrenheit).
• Koko mu yaw.
• Ɛwa.

Saa tebea yi nso ma asiane a ɛwɔ hɔ sɛ obi benya akisikuru no yɛ kɛse. Akisikuru yɛ aduruyɛ mu tebea a egye ntɛmpɛ . Sɛ wowɔ sɛnkyerɛnne ahorow a edidi so yi a, kɔ ayaresabea ntɛm ara:

• Ɔhaw ahorow a ɛfa nipadua no kari pɛ anaasɛ nea ɛyɛ adwuma bom ho.
• Anisoadehu a ɛyɛ kusuu anaasɛ anisoadehu abien.
• Kesereneeyɛ.
• Mmerewa anaasɛ ɛyɛ mmerɛw wɔ nipadua no fã biako.
• Ɔkasa a ɛyɛ den (akasakasa).

Awiei koraa no, nneɛma kakraa bi a ɛsɛ sɛ wokae

Sickle cell anemia yɛ tebea a emu yɛ den ankasa. Mfe bi a atwam ni no, na nkokoaa a wɔwoo wɔn a wɔwɔ saa yare yi no nni anidaso kɛse biara sɛ wobenya nkwa. Nanso,Aduruyɛ mu nhwehwɛmu anya nkɔso kɛse wɔ mfe du anaa nea ɛte saa a atwam no mu, enti mprempren nnipa pii tumi di yare a enni sabea yi ho dwuma na wɔtra ase yiye kakra.

Sɛ wo anaa wo ba wɔ saa yare yi a, bere a w’ani gye nkɔso a woanya wɔ bere a atwam no ho no, nya daakye ho anidaso. Nhwehwɛmufo rebɔ mmɔden bere nyinaa sɛ wobenya ayaresa foforo a wɔde bɛsa yare yi. Wo ne wo duruyɛfo nkasa na hu nnuruyɛ mu sɔhwɛ foforo. Mma anidasoɔ nnyae da . Ɛho hia paa sɛ wudi aduruyɛ mu afotu a ɛfata akyi na wunya adwempa.

` Sickle cell anemia, mogya a ɛtɔ kɔ nipadua mu, awosu mu nyarewa, mogya mu nyarewa, awosu mu nsakrae, hemoglobin, akwahosan ho afotu