So wo hwene mu mogya taa tu? So wunya nsensanee kɔkɔɔ wɔ wo honam ani? So eyi betumi ayɛ HHT (Hereditary Hemorrhagic Telangiectasia)?

So wo hwene mu mogya taa tu? Anaasɛ wowɔ wo honam ani nsensanee kɔkɔɔ nketenkete, titiriw w’anim, w’ano, ne wo nsateaa ano? Ebia wo maame, wo papa, anaa obi foforo a ɔwɔ w’abusua mu ahyia saa ɔhaw ahorow yi. Ebia yɛremfa yɛn adwene nsi saa nneɛma yi so kɛse, na yɛaka sɛ, "Oo, ɛno yɛ yɛn awo ntoatoaso ara kwa." Nanso, ɛtɔ da bi a ebia aduruyɛ mu ntease bi wɔ eyi akyi a ɛsɛ sɛ yɛma yɛn ani da hɔ. Ɛnnɛ yɛreka tebea a ɛte saa a ɛntaa nsi nanso ɛho hia yiye a ɛsɛ sɛ yɛma yɛn ani da hɔ ho asɛm. Ɛno ne HHT, anaasɛ Hereditary Hemorrhagic Telangiectasia .

Sɛ yɛbɛka no tiawa a, dɛn ne HHT?

HHT yɛ awosu mu tebea a efi awo ntoatoaso so kɔ awo ntoatoaso so. Ɛka ɔkwan a yɛn mogya ntini anaa mogya ntini no fa so hyehyɛ no titiriw. Susuw mogya ntini nhyehyɛe a ɛwɔ yɛn nipadua mu no ho sɛ akwan a atwa yɛn ho ahyia. Ntini ahorow wɔ hɔ, te sɛ akwan akɛse, ne ntini ahorow, te sɛ akwan akɛse. Wɔfrɛ akwan nketewa a ɛwɔ nkyɛnkyɛn a ɛka akwan akɛse abien yi bom no sɛ ntini nketenkete.

Nea ɛkɔ so wɔ obi a ɔwɔ HHT mu ne sɛ saa nkitahodi a ɛyɛ mmerɛw a wɔfrɛ no capillaries yi ntumi nyɛ adwuma yiye. Mmom no, nkitahodi tẽẽ, a ɛnkɔ so daa, na ɛyɛ mmerɛw wɔ ntini ne ntini ntam. Wɔ nnuruyɛ mu no, yɛfrɛ saa nkitahodi ahorow a ɛnteɛ yi Arteriovenous Malformations (AVMs) .

Saa AVM ahorow yi betumi ayɛ kɛse wɔ yɛn nipadua no akwaa biara mu, sɛ nhwɛso no, wɔ hwene, ahurututu, dwensɔtwaa, anaa amemene mpo mu. Wɔfrɛ AVM ketewaa bi a ɛba honam ani no Telangiectasia . Eyinom ne nsensanee kɔkɔɔ nketenkete a epue wɔ wo honam ani te sɛ anofafa no. Saa mogya ntini a ɛyɛ mmerɛw yi betumi apae ntɛmntɛm. Sɛ wɔpae na mogya tu a, ebetumi de tebea horow a emu yɛ den mpo aba, a egyina baabi a ɛwɔ so.

Saa yare yi ka nnipa bɛyɛ 5,000 biara mu biako wɔ wiase nyinaa. Nanso esiane sɛ wonhu nnipa pii yare no nti, wogye di sɛ ebia ayarefo bɛdɔɔso. Ebetumi aba nnipa a wɔadi mfe biara ne abusuakuw biara mu. Wɔsan frɛ no Osler-Weber-Rendu yare .

Dɛn ne HHT yare no ho sɛnkyerɛnne atitiriw?

HHT ho sɛnkyerɛnne betumi ayɛ soronko wɔ onipa biara ho. Egyina baabi a mogya ntini a ɛnyɛ ne kwan so (AVM) a yɛadi kan aka ho asɛm no wɔ wɔ nipadua no mu. Ebia nnipa binom rennya yare no ho sɛnkyerɛnne biara a ɛda adi. Nanso afoforo betumi anya yare no ho sɛnkyerɛnne a emu yɛ den paa.

Momma yɛnkyekyɛ saa sɛnkyerɛnne ahorow yi mu wɔ pon a ɛwɔ ase ha no so.

Dɛn nti na HHT nya nkɔso?

Eyi yɛ awosu mu nneɛma koraa.Biribi na ɛde ba. Ɛne sɛ, ɛnyɛ yare a ɛde ɔyare mmoawa ba. Ɛyɛ biribi a wonya fi awofo hɔ ma mmofra. HHT yɛ yare a awosu mu abɔde titiriw bi (dominant disorder) na ɛde ba. Ɛno kyerɛ sɛ, sɛ w’awofoɔ mu biara wɔ saa yareɛ yi a, wowɔ hokwan 50% sɛ wo nso wobɛnya saa yareɛ yi.

HHT nam nkwaadɔm mu nsakrae a ɛba awosu mu nkwaadɔm abien mu (`ENG` awosu mu abɔde ne `ACVRL1` awosu mu nkwaadɔm), na nyansahufo da so ara reyɛ eyi ho nhwehwɛmu.

Sɛ wowɔ HHT a, ɛho hia yiye sɛ wo ne wo duruyɛfo kasa fa sɛnea ebetumi aba sɛ wo mma benya bi afi awo mu ho.

Ɔkwan bɛn so na wohu HHT?

Ebia oduruyɛfo bi besusuw sɛ eyi bere a wate wo yare no ho sɛnkyerɛnne ne w’abusua abakɔsɛm akyi. Ɛwom sɛ wobetumi ayɛ awosu mu nhwehwɛmu de akyerɛ sɛ wɔahu yare no de, nanso wɔtaa gyina sɛnkyerɛnne ahorow so na ɛkyerɛ sɛ obi anya yare no.

Wo duruyɛfo besusuw sɛ wowɔ HHT sɛ anyɛ yiye koraa no wowɔ nea edidi so yi mu abiɛsa a:

• Mogya a ɛba hwene mu mpɛn pii.
• Telangiectasias pii a ɛwɔ honam ani mmeae a nsensanee taa ba (anim, anofafa, nsateaa).
• AVM anaa Telangiectasia a wowɔ wɔ akwaa bi a ɛwɔ nipadua no mu (te sɛ ahurututu, amemene, mmerɛbo) mu.
• Abusua muni a ɔbɛn no (ɛna, agya, onua) a ɔwɔ HHT.

Nhwehwɛmu a wɔyɛ de si yare no so dua

Ebia wo duruyɛfo bɛkamfo akyerɛ wo sɛ wobɛyɛ nhwehwɛmu ahorow bi te sɛ:

• Ultrasound Scan: Eyi boa ma wohu sɛ ebia AVM ahorow wɔ mmerɛbo no mu anaa.
• MRI (Magnetic Resonance Imaging) Scan: Mfaso wɔ so kɛse, titiriw wɔ nhwehwɛmu a wɔyɛ sɛ AVM ahorow wɔ amemene no mu no mu.
• CT (Computed Tomography) Scan: Ebetumi anya nipadua no mu akwaa ahorow ho mfonini a emu da hɔ.
• Bubble Test (Echocardiogram): Eyi yɛ sɔhwɛ titiriw bi. Wɔde hwehwɛ sɛ ebia AVM ahorow wɔ ahurututu no mu anaa.

Dɛn ne ayaresa ahorow a wɔde sa HHT?

Ade a edi kan a ɛsɛ sɛ yɛkae ne sɛ wonni aduru biara a wɔde sa HHT. Nanso, ayaresa a etu mpɔn pii wɔ hɔ a ebetumi aboa ma woadi yare no ho sɛnkyerɛnne ahorow so, atew asiane a ɛwɔ hɔ sɛ wubehyia ɔhaw ahorow a emu yɛ den so, na aboa wo ma woatra ase sɛnea ɛsɛ.

Bere a woresa wo mprempren sɛnkyerɛnne ahorow no, wo duruyɛfo no nso bɛhwɛ sɛ ebia AVM ahorow biara a ahintaw a ebia ennya nnyaa sɛnkyerɛnne ahorow no anaa.

Akwan a wɔfa so sa yare no bi ni:

• Sɛ mogya taa tu wo hwene mu a: Fa ngo ne nkyene a wɔde petepete wo hwene mu di dwuma na ama hwene no ayɛ nwini.
• Wɔ Monemia ho: Ma nnuru a wɔde si iron ananmu anaa sɛ ɛho hia a, fa mogya ma.
• Sɛnea ɛbɛyɛ a mogya atɔ no gyae: Laser ayaresa (`Ablation`) sɛe mogya ntini nketenkete a mogya retu no.
• Embolization: Eyi hwehwɛ sɛ wosiw mogya ntini a ɛde AVM a asiane wom sɛ mogya bɛtu anaasɛ ade titiriw bi bɛpae mu ba.
• Oprehyɛn anaa mframa a wɔde sa yare: Wɔde eyinom yi AVM ahorow bi fi hɔ anaasɛ wɔtew so.
• Nnuru bi a wobegyae: Ebia ebehia sɛ wogyae nnuru te sɛ aspirin a ɛtew mogya a ɛtwetwe no so bere a nnuruyɛfo de afotu ma no.

Nneɛma a ɛsɛ sɛ wususuw ho bere a wo ne HHT te no

Ebia obi a ɔwɔ HHT behia sɛ wɔhwɛ no wɔ aduruyɛ mu wɔ ne nkwa nna nyinaa mu na wɔsa no yare, nanso sɛ wɔsa no yare yiye a, HHT ayarefo no nkwa nna a ɛfata.

Dɛn na wobetumi ayɛ de asiw hwene mu mogya ano?

• Wo ne wo duruyɛfo nkasa na kwati nnuru a ɛma mogya tu kɔ soro (e.g. aspirin, NSAIDs).
• Ma wo hwene nyɛ nwini bere nyinaa. Humidifier a wode bedi dwuma wɔ fie, nkyene a wode petepete hwene mu, ne srade a wo duruyɛfo akyerɛw ama wo a wode bɛhyɛ wo ho no ho hia yiye.
• Fa wo da biara da nsɛm to hɔ na hwɛ sɛ ebia nnuan anaa dwumadi ahorow bi ma wo hwene mu mogya yɛ kɛse anaa.

Sɛ wɔahu sɛ wowɔ HHT a, ɛho hia yiye sɛ wutu w’abusuafo a aka no fo sɛ wɔn nso wɔnyɛ nhwehwɛmu, efisɛ dodow a wohu yare no ntɛm no, dodow no ara na wobetumi asiw nsɛnnennen a emu yɛ den ano.