So wo anaa wo ba no wɔ anisoadehu mu haw? Sua Stargardt Yare no ho ade!

So wo anaa wo ba no wɔ ɔhaw bi a wuntumi nhu nneɛma tẽẽ, anaasɛ w’ani reyɛ ayɛ kusuu? Ebia wubetumi ahu nneɛma a atwa wo ho ahyia, nanso nea worehwɛ no mu nna hɔ. Sɛ wowɔ sɛnkyerɛnne ahorow te sɛ eyinom a, ade biako a ebetumi de aba ne tebea bi a wɔfrɛ no Stargardt Yare . Momma yɛnka eyi ho asɛm wɔ ɔkwan tiawa bi a wubetumi ate ase so.

Dɛn ne Stargardt Yare?

Sɛ yɛbɛka no tiawa a, Stargardt yare no yɛ tebea a ɛka yɛn aniwa fã a ɛho hia sen biara , `macula` . Susuw ho saa kwan yi so: sɛ w’ani te sɛ mfoninitwa afiri a, `retina` yɛ ntini a ɛwɔ mfoninitwa afiri no akyi, te sɛ sini no, baabi a wɔkyere mfonini ahorow. `macula` yɛ beae ketewa bi a ɛyɛ mmerɛw yiye wɔ `retina` mfinimfini pɛɛ. Sɛ yɛhwɛ yɛn anim tẽẽ, sɛ yɛkenkan nwoma, sɛ yɛhwɛ obi anim a, ɛyɛ saa `macula` yi na ɛboa yɛn ma yɛhunu nneɛma yie. Yɛfrɛ eyi `mfinimfini anisoadehu` .

Sɛ wowɔ Stargardt Yareɛ a, wo ``mfinimfini anisoadehunu`` no so tew nkakrankakra bere kɔ so. Ɛtɔ da bi a, eyi nso betumi aka wo ``peripheral vision``, a ɛyɛ tumi a wode hu nneɛma a atwa w'ani ho ahyia.

Ebia woate macular degeneration ho asɛm . Ɛyɛ yare a ɛtaa ka nnipa a wɔn mfe akɔ anim, titiriw wɔn a wɔadi boro mfe 60. Wɔfrɛ no aniwa a ɛyɛ mmerɛw a ɛma obi nyin . Nanso, Stargardt yare no yɛ soronko. Ɛtaa ka mmofra ne mmerante ne mmabaa a wonnii mfe 20. Ɛno nti na ɛtɔ mmere bi a nnuruyɛfo frɛ no juvenile macular degeneration . Sɛ ɛka retina no anoano a, wɔfrɛ no fundus flavimaculatus .

Afei ma yɛnhwɛ nea enti a eyi ba. Yɛn nipadua wɔ ade kɔkɔɔ bi a srade wom a wɔfrɛ no `lipofuscin` . Mpɛn pii no, eyi fi nipadua no mu. Nanso, wɔ obi a ɔwɔ Stargardt Yare no mu no, wɔyɛ saa `lipofuscin` yi boro so anaasɛ wɔmfa mfi mu yiye. Afei saa `lipofuscin` a ɛboro so yi boaboa ano wɔ `retina` no mu. Eyi ma ` photoreceptors`, nkwammoaa soronko bi a ɛte hann nka wɔ `retina` mu no sɛe. Bere kɔ so no, saa ɔsɛe yi ma obi nhu ade daa.

Dɛn ne Stargardt Yare no ho sɛnkyerɛnne?

Stargardt Yare no betumi ama nsakrae a edidi so yi aba w’ani ne w’ani so:

• Sɛ wuhu nsensanee tuntum anaa mmeae a ɛyɛ kusuu wɔ anisoadehu mu:Sɛ wohwɛ w’anim tẽẽ a, mmeae bi betumi ayɛ te sɛ tuntum anaa sum.
• Blurred vision : Nneɛma a wohu no yiye, anisoadehu a ɛyɛ kusuu.
• Hann a wɔte nka: Te nka sɛ ɛyɛ den sɛ wubehu ade wɔ owia hann anaa akanea a ɛhyerɛn mu.
• Kɔla anifurae foforo : Ɛwom sɛ kan no na wuhu kɔla ahorow yiye de, nanso mprempren wuntumi nhu kɔla ahorow bi yiye.
• Ɛyɛ den sɛ wobɛsesa wo ho akɔ hann a ɛba fam/ɛkɔ soro mu: Sɛ worefi baabi a hann kɔ baabi a ɛhɔ yɛ sum mpofirim, anaasɛ worefi baabi a ɛhɔ yɛ sum akɔ baabi a ɛhɔ yɛ hann a, egye bere tenten ansa na aniwa no atumi ayɛ nsakrae.
• Anadwo anisoadehu a enye : Anadwo anisoadehu bɛyɛ ketewaa bi sen kan no.

Ade a ɛho hia ne sɛ Stargardt Yare no ho sɛnkyerɛnne taa ba nkakrankakra. Bere kɔ so no, ɛkame ayɛ sɛ ebia wobɛhwere w’anisoadehu a ɛwɔ mfinimfini no nyinaa. Nanso, ebia woda so ara tumi hu akyirikyiri bi fi w’ani nkyɛnkyɛn (peripheral vision). Nanso, nneɛma a ɛda yɛn anim tẽẽ no renyɛ nea emu nna hɔ kɛse.

Dɛn ne nneɛma a ɛde Stargardt Yare no ba?

Stargardt Yareɛ yɛ ``awosuo mu tebea`` . Ɛne sɛ, nsakrae a ɛba yɛn awosu mu nkwaadɔm mu na ɛde ba. Titiriw no, nea ɛde ba titiriw ne nsakrae a ɛba awosu mu abɔde bi a wɔfrɛ no ``ABCA4 awosu mu abɔde mu.`` Saa ``ABCA4 awosu mu abɔde`` yi boa yɛn `` retina`` ma ɛyɛ adwuma yiye.

Eyi yɛ `agyapade` . Ɛno kyerɛ sɛ efi awofo hɔ kɔ mmofra nkyɛn. Stargardt Yare no fi awo mu wɔ `autosomal recessive pattern` mu . Sɛ yɛbɛka no tiawa a, sɛ abofra bɛnya saa yareɛ yi a, ɛsɛ sɛ ɛna ne agya no nyinaa nya saa `ABCA4 gene` a wɔasesa yi. Ɛnnɔɔso sɛ onipa biako pɛ benya bi.

Ɔkwan bɛn so na nnuruyɛfo hu eyi? (Nyare a Wɔahu) .

Aniwa ho oduruyɛfo betumi ahu sɛ wowɔ saa yare yi anaa. Ɔbɛhwɛ w’ani , ahwɛ sɛnea w’ani hu ade, na wahwɛ sɛnea w’aniwa te. Ɛho behia sɛ woka bere a wo yare no ho sɛnkyerɛnne fii ase ne ɔhaw ahorow a worehyia kyerɛ oduruyɛfo no.

Ebia ɛho behia nso sɛ woyɛ sɔhwɛ ahorow bi te sɛ eyinom:

• Electroretinography (ERG): Eyi hwɛ sɛnea wo retina yɛ n’ade wɔ hann a ɛhyɛn w’ani so ho.
• Fluorescein angiography: Eyi yɛ nhwehwɛmu a wɔyɛ de hu mogya ntini a ɛwɔ aniwa no mu.Hwɛ, wɔde aduru titiriw bi gu ntini bi a ɛwɔ wo nsa mu mu na wotwa w’ani mu mfonini.
• Fundus mfoninitwa ne fundus autofluorescent mfoninitwa: Eyi ma wo retina ne wo macula mfonini a emu da hɔ. Eyi ma wuhu sɛnea wɔde lipofuscin no gu mu.
• Awosu mu nhwehwɛmu : Eyi betumi asi so dua sɛ ebia nkwaadɔm mu nsakrae bi wɔ ABCA4 awosu mu nkwaadɔm no mu anaa.
• Optical coherence tomography (OCT): Eyi te sɛ retina no ho mfonini. Ebetumi ahwɛ nneɛma te sɛ retina no ntoatoaso no mu duru, sɛ ebia lipofuscin wɔ hɔ anaa, ne sɛ ebia asɛe anaa.

Dɛn ne Stargardt Yare no fã ahorow?

Ebia w’ani duruyɛfo bɛkyekyɛ yare no mu afã horow pii, a egyina sɛnea ɛkɔ so. Ɔkwan a wɔfa so yɛ no ni:

• Ɔfã 1: Saa bere yi de, ade kɔkɔɔ bi a wɔfrɛ no lipofuscin fi ase yɛ sɛ nsensanee nketenkete wɔ macula no so. Ebia wubenya yare no ho sɛnkyerɛnne a emu nyɛ den koraa, anaasɛ wunni sɛnkyerɛnne biara koraa.
• Ɔfã 2: Seesei saa `lipofuscin` nsensanee no atrɛw akɔ `retina` no mmeae afoforo a atwa `macula` ho ahyia.Ebedu saa bere yi no ebia woafi ase ate sɛnkyerɛnne no nka kakra sen kan no.
• Ɔfã 3: Saa bere yi mu no, `lipofuscin` nneɛma nketenkete a aboaboa ano no fi ase boaboa ano wɔ `macula` no mu bio na efi ase sɛe `macula` no. Wɔfrɛ eyi `atrophy` ( nkwammoaa wu). Eyi ma yare no ho sɛnkyerɛnne no mu yɛ den.
• Ɔfã 4: Mprempren ɔsɛe (atrophy) a ɛba macula no so no mu yɛ den yiye. Eyi betumi ama w’aniwa a ɛwɔ mfinimfini no ayera koraa anaa ne fã bi.

Dɛn ne Stargardt Yare no ayaresa?

Nea ɛyɛ awerɛhow no, mprempren wonni Stargardt Yare no ano aduru anaa ayaresa biara a ebetumi asan ɔsɛe a ɛde ba no. Nanso mma ɛnhaw wo. W’ani duruyɛfo betumi aboa wo ma woadi wo yare no ho sɛnkyerɛnne ahorow ho dwuma na ama w’ani a ɛyɛ mmerɛw no ayɛ brɛoo. Wubetumi ayɛ nneɛma te sɛ:

• Kwati sɛ wobɛnom nnuru a vitamin A wom.Nhwehwɛmu ahorow bi ada no adi sɛ nnipa a wɔwɔ Stargardt Yare no betumi ahu ade ntɛmntɛm sɛ wɔnom vitamin A pii a. Enti, nnom vitamin A biara a wo ne wo duruyɛfo nkasa.
• Sɛ wode ahwehwɛ, ahwehwɛ a wɔde hwɛ ade ne/anaasɛ nneɛma a ɛboa ma wohu ade yiye a, ebetumi aboa wo kɛse wɔ wo da biara da dwumadi ahorow mu.
• Gyae sigaretnom (ne nneɛma afoforo a nicotine wom te sɛ vaping) koraa. Sigaretnom nyɛ papa mma w’ani koraa.
• Hyɛ kyɛw anaa ahwehwɛ pa a wode bɛbɔ w’ani ho ban bere a worekɔ abɔnten no.

Kae sɛ eyinom nyɛ ayaresa. Nanso, wobetumi aboa wo ma woatra ase yiye bere tenten biara a wubetumi.

So wobetumi asa Stargardt Yare no?

Mprempren wonni Stargardt Yare no aduru biara. Nanso, w’ani duruyɛfo betumi aboa wo ma woatra ase ne tebea no.

Asɛmpa bi wɔ hɔ. Nhwehwɛmufo kɔ so reyɛ nnuruyɛ mu sɔhwɛ ahorow de ahwehwɛ ayaresa foforo ama tebea horow te sɛ aniwa a ɛyɛ mmerɛw (a Stargardt Yare ka ho). Bisa w’ani duruyɛfo sɛ wubetumi de wo ho ahyɛ ayaresabea sɔhwɛ ahorow yi biako mu anaa. Sɛ saa a, ebia wubenya hokwan anya ayaresa a aba so foforo, a wɔasɔ ahwɛ.

Bere bɛn na ɛsɛ sɛ mehwehwɛ aduruyɛ mu afotu?

Hwɛ oduruyɛfo anaa aniwa ho ɔyaresafo bere a wuhu nsakrae biara wɔ w’ani anaa w’ani so ara pɛ. Stargardt Yare no ho sɛnkyerɛnne betumi ayɛ te sɛ aniwa mu nyarewa afoforo a ebia abu so kɛse de. Enti, ɛho hia yiye sɛ wohu aniwa mu haw biara na wosa ntɛm ara sɛnea wobetumi .

Sɛ wowɔ Stargardt Yare a, dɛn na wubetumi ahwɛ kwan?

Ɛsɛ sɛ wohwɛ kwan sɛ wobɛhwere w’aniwa a ɛwɔ mfinimfini no nkakrankakra. Wɔ nnipa dodow no ara fam no, adehwere yi ba nkakrankakra, wɔ mfe pii mu, ɛtɔ mmere bi a mfe du du pii mu. Nanso, wɔ nnipa binom fam no, ebetumi asi ntɛmntɛm. Ebia nkwaadɔm mu nsakrae ko a ɛba wo ABCA4 awosu mu nkwaadɔm mu no na ɛbɛkyerɛ sɛnea wobɛhwere w’ani so ntɛmntɛm ne sɛnea wobɛhwere w’ani. W’ani duruyɛfo bɛka eyi ho nsɛm pii akyerɛ wo.

Ɛho behia sɛ woyɛ w’ani mu nhwehwɛmu daa . Bisa wo duruyɛfo mpɛn dodow a ɛsɛ sɛ wohwɛ w’ani ne nhwehwɛmu afoforo a ɛsɛ sɛ woyɛ.

Mɛyɛ dɛn ahwɛ me ho wɔ Stargardt Yare no ho?

Nneɛma pii wɔ hɔ a wubetumi ayɛ de ahwɛ wo ho so:

• Di aduan a ahoɔden wom. Di nhabannuru ne nnuaba pii.
• Dwumadie. Wo nipadua a wobɛma ayɛ nnam no ye ma biribiara.
• Nnom sigaret.
• Di adwennwen so.
• Kɔ wo duruyɛfo nkyɛn wɔ bere ano.

Bere bɛn na ɛsɛ sɛ mekɔ me duruyɛfo nkyɛn sɛ mewɔ Stargardt Yare a?

W’ani duruyɛfo bɛka akyerɛ wo sɛ kɔ so hwɛ wɔn. Hwɛ hu sɛ wobɛkɔ saa nna no mu. Afei nso, sɛ nsakrae bi ba w’ani so mpofirim, anaasɛ wote ɛyaw anaa wo ho nyɛ wo dɛ wɔ w’ani so a, kɔ wo duruyɛfo nkyɛn ntɛm ara.

Nsɛmmisa bɛn na ɛsɛ sɛ mibisa me duruyɛfo fa Stargardt Yare no ho?

Sɛ wowɔ Stargardt Yare a, ebia wobɛpɛ sɛ wubisa wo duruyɛfo nsɛm te sɛ eyinom:

• So wubetumi ahyɛ nyansa sɛ wɔne afoforo a wɔwɔ tebea yi mu mmoa kuw bi mma me?
• So mefata sɛ mede me ho hyɛ `aduruyɛ mu sɔhwɛ' mu ?
• So ɛsɛ sɛ me ne awosu ho ɔfotufo bi kasa ? (Eyi betumi aboa wo ma woahu sɛ ebia nnipa afoforo a wɔwɔ w’abusua mu wɔ asiane mu anaa.)
• So wubetumi akyerɛ nnwinnade anaa akwan biara a ebetumi aboa me ma mayɛ da biara da nnwuma ntɛmntɛm a m'ani nhu ade yiye ?

Nea etwa to no, nneɛma a ɛsɛ sɛ wokae (Take-Home Message) .

Stargardt Yare a wobɛtra ase no betumi ayɛ hu. Biribiara a ɛka w’anisoadehu no betumi anya wo so nkɛntɛnso kɛse. Nanso ɛnyɛ wo nkutoo na wowɔ. W’ani ho oduruyɛfo ne akwahosan ho adwumayɛfo kuw no betumi aboa wo ma woayɛ nsakrae wɔ w’aniwa mu nsakrae mu, abɔ w’ani ho ban, na woatra ase a ahobammɔ ne ahotɔ wom.

Ɛwom sɛ mprempren wonni Stargardt Yare no ano aduru de, nanso nhwehwɛmufo hwehwɛ ayaresa foforo bere nyinaa. Sɛ w’ani gye ho a, wo ne wo duruyɛfo nkasa mfa wo ho bɛhyɛ ayaresabea sɔhwɛ bi mu. Mma w’abaw!

` Stargardt Yare, Aniwa a Wohu, Mfinimfini Anisoadehu, Retina, Macula, Awosu mu Nyarewa