Mogya a ɛsen fa yɛn ntini mu no te sɛ asubɔnten a ɛma nkwa, ɛnte saa? Mogya mu nkwammoaa kɔkɔɔ a ɛwɔ mogya yi mu no kura mframa pa a nkwammoaa biara a ɛwɔ yɛn nipadua mu hia no. Enti susuw nea ɛbɛba sɛ mogya mu nkwammoaa kɔkɔɔ a ɛho hia paa yi sɛe mpofirim na wɔsɛe no a ntease biara nnim a, susuw ho hwɛ? Nokwarem no, ɛyɛ hu kakra. Ɛnnɛ yɛrebɛka mogya mu yareɛ bi a ɛntaa nsi, nanso ɛho hia paa, a ɛhia sɛ yɛn nyinaa hu ho asɛm. Wɔfrɛ eyi Paroxysmal Nocturnal Hemoglobinuria, anaa
PNH tiawa.
Sɛ yɛbɛka no tiawa a, dɛn ne PNH?
PNH yɛ mogya mu yare a ɛntaa nsi koraa. Wɔ eyi mu no
, mogya mu nkwammoaa kɔkɔɔ a ɛwɔ yɛn mogya mu no sɛe kwa. Sɛ yɛbɛka no pɛpɛɛpɛ a, yɛn ankasa
nipadua mu tumi a ɛko tia nyarewa no sɛe mogya mu nkwammoaa kɔkɔɔ yi. Nea enti a ɛte saa ne sɛ nnipa a wɔwɔ saa yare yi mogya mu nkwammoaa kɔkɔɔ nni protein soronko bi a ɛbɔ wɔn ho ban. Enti, yɛn nipadua no nipadua mu ahoɔden a ɛko tia nyarewa no ntumi nhu wɔn sɛ ‘yɛn ankasa nkwammoaa’. Sɛ mogya mu nkwammoaa kɔkɔɔ sɛe ntɛmntɛm wɔ saa kwan yi so a, yɛn nnompe mu ntini no ntumi nyɛ mogya mu nkwammoaa kɔkɔɔ foforo wɔ ahoɔhare koro no ara mu. Afei mogya a ɛwɔ nipadua no mu no so tew. Yɛfrɛ tebea yi
mogya a ɛtɔ kɔ nipadua mu . Afei nso, ade foforo a asiane wom wɔ saa yare yi ho ne
sɛ ɛma asiane a ɛwɔ hɔ sɛ mogya bɛtɔ mogya ntini no mu no yɛ kɛse. PNH yare no nka obiara wɔ ɔkwan koro so. Nnipa binom nya yare no ho sɛnkyerɛnne a emu nyɛ den koraa. Wobetumi atra ase sɛnea ɛsɛ. Nanso ebinom fam no, yare no betumi ayɛ den kakra. Ebia ebehia sɛ wɔkɔ so nom nnuru ne mogya a wɔde ma wɔn.
Dɛn na ɛde PNH yare no ba?
Ade a ɛho hia sen biara wɔ ha ne sɛ PNH
nyɛ yare a wɔde awo obi. Ɛno kyerɛ sɛ wɔmfa mfi ɛna hɔ nkɔ abofra hɔ. Na ɛnyɛ yare a wɔde kɔ nnipa mu. Nokwarem no, ɛyɛ yare a ɛntaa nsi koraa. Fa no sɛ, wɔ ɔman te sɛ Amerika mu no, bere a wohu kokoram foforo bɛyɛ ɔpepem 1.8 afe biara no, PNH ayarefo 400 kosi 500 pɛ na wohu. Saa yare yi fi nsakrae a ɛba awosu mu nkwaadɔm bi a wɔfrɛ no `PIGA` mu wɔ ntini nkwammoaa a ɛwɔ yɛn nnompe mu ntini mu no mu. Sɛ yɛbɛka no tiawa a, mfomso ketewaa bi wɔ ‘akwankyerɛ’ a nnompe mu ntini a ɛyɛ adwumayɛbea a ɛyɛ mogya mu nkwammoaa kɔkɔɔ no nsa ka no mu. Esiane mfomso yi nti, mogya mu nkwammoaa kɔkɔɔ a wɔreyɛ no nnya saa protein a ɛbɔ ho ban no.
Nnuruyɛfo da so ara ntumi nhu nea enti a saa `PIGA` awosu mu abɔde yi sesa mpofirim, anaasɛ nea enti a nnipa binom nkutoo na wonya mogya mu nkwammoaa kɔkɔɔ a ɛnyɛ ne kwan so yi .
So wowɔ saa sɛnkyerɛnne ahorow yi nso?
Sɛ mogya mu nkwammoaa kɔkɔɔ no sɛe a, kɔla kɔkɔɔ a wɔfrɛ no hemoglobin a ɛwɔ mu no kɔ mogya no mu. Wɔnam asaabo a ɛwɔ nsu mu no so yi saa nneɛma fĩ yi fi nipadua no mu. Enti, ebia nsu no kɔla bɛyɛ
kɔkɔɔ, bruu, anaa tuntum sen sɛnea ɛte daa . Nanso, ɛnyɛ obiara a ɔwɔ PNH na ɛsono ne nsu kɔla. Ayarefo no mu fã pɛ na wohu saa sɛnkyerɛnne yi. Na ɛyɛ sum titiriw wɔ nsu a wɔde fa mu anadwo anaa bere a wodi kan sɔre anɔpa no mu. Wɔ sɛnkyerɛnne titiriw yi akyi no, ebia sɛnkyerɛnne afoforo pii wɔ hɔ. Ma yɛnhwɛ nea wɔyɛ.
| Nsɛnkyerɛnne a ɛkyerɛ | Nkyerɛkyerɛmu a ɛnyɛ den |
|---|
| Ɔbrɛ a ɛtaa ba | Esiane sɛ mogya mu nkwammoaa kɔkɔɔ a ɛde mframa pa kɔ nipadua no mu no sua nti, wote ɔbrɛ kɛse nka bere a woayɛ adwuma kakra mpo awie no. Wo nipadua te nka sɛ nkwa nni mu. |
| Ahome a ɛyɛ tiaa | Sɛ wo nantew kakra anaasɛ woforo antweri bi a, wo ho yɛ wo yaw. Nea enti a ɛte saa ne sɛ wo nipadua no nnya mframa pa dodow a ehia. |
| Ɛnyɛ den sɛ wobɛpirapira na mogya atu | Nsonsonoe bruu kɛkɛ na epue wɔ nipadua no so. Kuru ketewaa bi mpo gye bere ansa na mogya atɔ no. |
| Ti a ɛtaa yɛ no yaw | Tiyɛ betumi de obi aba, titiriw esiane nsakrae a ɛba mogya mu nti. |
| Mogya a ɛtwetwe (Thrombosis) . | Eyi ne ɔhaw a asiane wom sen biara. Mogya a ɛbɛtɔ no betumi ayɛ anan, yafunu, anaa amemene ntini mu. |
| Nsonsonoe kɔkɔɔ a ɛwɔ honam ani | Ebia mogya nketenkete a ɛtɔ wɔ honam ani no na ɛde nsensanee kɔkɔɔ nketenkete a epue wɔ honam ani. |
| Ɔbarima ne ɔbea nna mu ɔhaw a ɛba mmarima mu | Wɔ yare no a emu yɛ den mu no, ebetumi ayɛ den ama mmarima sɛ wɔbɛtow wɔn ho esiane nkɛntɛnso a enya wɔ mogya a ɛkɔ nipadua no mu nti. |
Hena na ɛda adi sɛ obenya saa yare yi?
Sɛnea nnuruyɛfo kyerɛ no, asiane a ɛwɔ hɔ sɛ obi benya PNH no yɛ kɛse kakra ma nnipa binom.
- Wɔn a nnompe mu ntini a ɛyɛ mmerɛw : Sɛ biribi nti nnompe mu ntini no dwumadi yɛ mmerɛw a.
- Wɔn a wɔwɔ yare bi a wɔfrɛ no Aplastic Anemia : Eyi nso yɛ yare a ɛka nnompe mu ntini. Nnipa a wɔwɔ saa yare yi wɔ asiane mu sɛ wobenya PNH akyiri yi.
- Wɔ nnipa a wofi Asiafo fam no: Saa yare yi abu so wɔ Asiafo mu sen mmusuakuw afoforo mu.
Wɔtaa hu PNH wɔ
mpanyimfo a wɔadi mfe 30 mu , nanso ebetumi aba nkumaa nso, a mmofra nkumaa ne nkokoaa ka ho.
Ɔkwan bɛn so na wobetumi ahu yare no?
Esiane sɛ PNH yɛ yare a ɛntaa nsi na
ne sɛnkyerɛnne te sɛ nyarewa afoforo de nti, ɛtɔ mmere bi a ebetumi agye bere kakra ansa na wɔahu yare no. Titiriw wɔ obi a ne nsu kɔla nsakra mu no, sɛ oduruyɛfo bi nsusuw eyi ho a, wobetumi akyɛ sɛnea wobehu yare no. Sɛnea ɛbɛyɛ na woahu yare no, wo duruyɛfo no bedi kan abisa wo wo yare no ho sɛnkyerɛnne ne w’ayaresa ho abakɔsɛm. Afei, ɔbɛhyɛ sɛ wɔnyɛ mogya mu nhwehwɛmu ahorow. Eyinom mu no,
nhwehwɛmu a eye sen biara na ɛyɛ pɛpɛɛpɛ a wɔde si PNH so dua ne mogya mu nhwehwɛmu titiriw a wɔfrɛ no `Flow Cytometry`. Saa nhwehwɛmu yi betumi akyerɛ mogya mu nkwammoaa kɔkɔɔ dodow a saa protein a ɛbɔ wo ho ban no nni wo mogya mu pɛpɛɛpɛ.
Dɛn ne ayaresa ahorow a wɔde sa PNH?
Nea eye ne sɛ, mprempren ayaresa ahorow pii a etu mpɔn wɔ hɔ a wɔde di PNH ho dwuma. Wo duruyɛfo bɛhwɛ wo tebea no na wahu ayaresa a eye ma wo.
- Nnuru a ɛma nipadua no tumi ko tia nyarewa: Nnuru te sɛ eculizumab (Soliris) ne ravulizumab ( Ultomiris ) yɛ adwuma denam yɛn nipadua mu tumi a ɛko tia nyarewa no a esiw ano sɛ ɛnsɛe mogya mu nkwammoaa kɔkɔɔ no so. Eyinom nso brɛ asiane a ɛwɔ hɔ sɛ mogya bɛtɔ no ase.
- Steroids: Ɛtɔ mmere bi a wɔde eyinom di dwuma de siw mogya mu nkwammoaa kɔkɔɔ a wɔsɛe no ano.
- Nnuru a ɛma mogya yɛ mmerɛw:Wɔde eyinom ma na ama asiane a ɛwɔ hɔ sɛ mogya bɛtɔ no so atew.
- Mogya a wɔde ma: Sɛ nipadua no mu mogya dodow sua dodo a, wɔde mogya ma wɔ abɔnten ma mogya mu nkwammoaa kɔkɔɔ no dɔɔso.
Nea ɛka ho no, ayaresa ahorow bi wɔ hɔ a ɛboa nipadua no ma ɛma mogya mu nkwammoaa kɔkɔɔ pii wɔ ne mu.
- Vitamin ahorow te sɛ folic acid
- Ade a ɛma onipa nyin
- Androgen, ɔbarima mu ahoɔdennuru
Nnompe mu ntini a wɔde ma obi foforo betumi asa PNH koraa. Nanso, esiane sɛ ɛyɛ oprehyɛn a asiane wom kɛse na ɛyɛ den nti, sɛ ayaresa afoforo nyinaa anyɛ yiye nkutoo a nnuruyɛfo kamfo kyerɛ.
Nkrasɛm a Wɔde Kɔ Fie
- PNH nyɛ yare a wonya fi awo mu anaasɛ wɔde kɔ nnipa mu. Ɛyɛ mogya mu yare a ɛntaa nsi koraa a ɛnam nsakrae a ɛba awosu mu nkwaadɔm bi mu wɔ nnompe mu ntini mu nti.
- Nsɛnkyerɛnne titiriw ne nsu a ɛyɛ tumm esiane mogya mu nkwammoaa kɔkɔɔ a ɛpaapae, ɔbrɛ a ɛtra so, ɛyɛ den sɛ ɔbɛhome , ne asiane a ɛwɔ hɔ sɛ mogya bɛtɔ nti.
- Sɛ wokɔ so nya saa sɛnkyerɛnne ahorow yi a, mma wo ho nnpopo na kɔ oduruyɛfo a ɔfata nkyɛn ntɛm ara sɛnea wubetumi. Titiriw no, ka eyi ho asɛm kyerɛ wo duruyɛfo .
- Wobetumi de mogya mu nhwehwɛmu titiriw bi a wɔfrɛ no
Flow Cytometry ahu yare no pɛpɛɛpɛ. - Mprempren ayaresa ahorow a etu mpɔn yiye wɔ hɔ a wɔde di yare no ho dwuma na wɔasiw nsɛnnennen ano, enti ɛho hia yiye sɛ wodi aduruyɛ mu afotu a ɛfata akyi.
PNH Sinhala, Paroxysmal nocturnal hemoglobinuria, mogya mu nyarewa, mogya mu nkwammoaa kɔkɔɔ a ɛpaapae, nsu a ɛyɛ tumm, nnompe mu ntini mu nyarewa, mogya a ɛtɔ kɔ nipadua mu
💬 Comments (0)
Wɔnnya nyɛɛ nsɛm biara. Fa wo nsɛm no ka ho wɔ ha nea edi kan.
Fa wo nsɛm no ka ho