So nsonsonoe bi wɔ wo ba kumaa no ani so? Momma yensua ‘Optic Nerve Hypoplasia’ ne ‘Septo-Optic Dysplasia’ ho ade!

When you look at your baby , have you ever felt like his eyes aren't looking straight at you, like they're just running here and there, or like they can't quite stay in one place? So ɛtɔ mmere bi a wote nka sɛ ɔnhwɛ agode ketewaa bi yiye, na ɔbɔ sanku kɛkɛ? Ɛyɛ ade a ɛfata sɛ ɛna anaa agya bɛte ehu ne dadwen pii nka bere a ohu nneɛma a ɛte sɛɛ no. Ɛnnɛ yɛbɛka tebea bi a ebetumi de saa sɛnkyerɛnne ahorow yi aba na ɛwɔ hɔ wɔ awo mu ho asɛm . Wɔfrɛ eyi sɛ ‘Optic Nerve Hypoplasia’.

Dɛn ne ‘Optic Nerve Hypoplasia’?

Sɛ yɛbɛka no tiawa a, Optic Nerve Hypoplasia yɛ tebea a wonya fi awo mu. Nea ɛkɔ so wɔ ha ne sɛ aniwa ntini a ɛde nkrasɛm kɔ yɛn aniwa ne amemene ntam no nnyin yiye anaasɛ ɛyɛ ketewaa. Fa no sɛ mfoninitwa mfiri abien. Nea mfoninitwa afiri no hu no, wɔde kɔ amemene no mu sɛ mfonini denam aniwa ntini no so. Enti sɛ saa ntini yi nnyin yiye a, nea aniwa no hu no nkɔ amemene no mu pefee. Eyi betumi de aniwa mu haw ahorow aba, te sɛ aniwa a ɛkyinkyin .

Saa tebea yi nka aniwa ntini no nkutoo. Ɛtɔ da bi nso a, ebetumi aka abofra no amemene no afã afoforo nkɔso, titiriw:

• Amemene no mfinimfini a ɛnteɛ: Ebia amemene no afã horow a ɛtetew afã abien no mu te sɛ septum pellucidum ne corpus callosum no rennyin yiye. Ɛtɔ da bi a, ebia eyinom renkɔ so koraa. Eyinom ho hia ma nkitahodi a ɛda amemene no afã horow ntam.

• Pituitary Gland Hypoplasia: Ebia woate Pituitary Gland ho asɛm. Ɛwɔ amemene no ase, wɔ Hypothalamus ase. Saa ntini ketewaa yi na ɛhwɛ yɛn nipadua mu dwumadi ahorow pii a ɛho hia so, titiriw hormone a wɔyɛ . Enti sɛ saa ntini yi annyin yiye a, ebia ɛrentumi nyɛ hormone ahorow a nipadua no hia no, anaasɛ ebetumi ayɛ kakraa bi pɛ.

Ɛtɔ da bi a, wɔsan frɛ saa tebea yi `(Optic Nerve Hypoplasia)` anaa `(Septo-Optic Dysplasia - SOD)` anaa `(de Morsier Syndrome)`. Eyi te saa efisɛ, sɛnea nhwehwɛmu ada no adi no, ɛkame ayɛ sɛ obiara a ɔwɔ `(SOD)` no wɔ aniwa ntini nkɔso a ɛka. Nanso, nnipa a wɔwɔ `(ONH)` (i.e. ntam 5% ne 10%) no mu kakraa bi pɛ na wɔwɔ amemene no mfinimfini afã horow no nkɔso a ɛka wɔn (sɛ nhwɛso no, `(Septum Pellucidum)`).

Saa tebea yi abu so dɛn?

Sɛnea akontaabu kyerɛ wɔ aman te sɛ United States mu no, mmofra 10,000 biara mu biakoWɔka sɛ saa tebea yi `(Optic Nerve Hypoplasia)` betumi aka nnipa bɛyɛ 100,000. Afei nso, wɔahu sɛ saa tebea yi ne ade titiriw a ɛma mmofra a wonnii mfe 3 nhu ade yiye. Mmofra a wɔte saa wɔ Sri Lanka nso.

So Optic Nerve Hypoplasia yɛ tebea a emu yɛ den?

Yiw, eyi yɛ tebea a emu yɛ den, na ɛtɔ mmere bi a ebetumi ayɛ aniberesɛm. Nanso ɛsono nea efi mu ba no wɔ onipa biara mu. Ebia mmofra binom betumi anya anisoadehu mu haw a ɛho hia. Afei nso, sɛ ɛka pituitary gland no a, ebetumi asiw nipadua no hormone a ɛyɛ adwuma no kwan. Ɔhaw ahorow bi a ɛfa hormone ho betumi de nkwa ato asiane mu mpo. Enti, sɛ wususuw sɛ wo ba no wɔ saa sɛnkyerɛnne ahorow yi, anaasɛ wuhu nsakrae bi wɔ ne suban mu a, ɛho hia yiye sɛ wobɛkɔ oduruyɛfo nkyɛn ntɛm ara, titiriw mmofra anaa aniwa ho oduruyɛfo.

Dɛn ne Optic Nerve Hypoplasia ho sɛnkyerɛnne ahorow?

Nsɛnkyerɛnne a wohu wɔ tebea yi mu no betumi aka aniwa biako pɛ anaa aniwa abien no nyinaa.

Nsɛnkyerɛnne a wotumi hu a ɛfa aniwa ho:

• Aniwa a ɛyɛ den: Eyi betumi afi aniwa a ɛso tew kakra so akosi aniwa a ɛyera koraa (Aniwa a ɛyɛ den anaa Anifurae).
• Nystagmus: Aniwa a ɛkɔ so tu fi ɔfã biako anaa soro ne fam, te sɛ dɔn a ɛto so abien, nanso ɛyɛ ntɛmntɛm.
• Strabismus (ani a wɔatwa) anaa Esotropia (ani a ɛnkyerɛ ɔkwan koro so): Ebia aniwa biako bɛhwɛ n’anim tẽẽ bere a aniwa foforo no betumi adan akɔ ɔkwan a ɛne no bɔ abira so.
• Ɛyɛ den sɛ wode w’adwene besi ade bi so: Sɛ wɔka kyerɛ onipa no sɛ ɔnhwɛ biribi te sɛ agode bi a, ebia ɔrentumi mfa n’adwene nsi so yiye.

Nsɛnkyerɛnne a ebetumi aba esiane amemene no nkɔso a ɛnteɛ nti:

• Adwene mu Nkɔso Ho Ɔhaw (`(Adwene mu Mmofra)`): Nneɛma te sɛ adesua mu nsɛnnennen, adwene mu tumi a ennya nkɔso wɔ ɔkwan a ɛfata mfe a obi adi so.
• Akisikuru: Nhumu a ɛyera mpofirim na ne ho popo.

Nsɛnkyerɛnne a ɛfa hormone ahorow ho a ebetumi aba esiane pituitary gland no nyin a ɛso atew nti:

Eyi ho hia yiye, efisɛ hormone ahorow di nneɛma pii so wɔ yɛn nipadua mu.

• Ɛyɛ den sɛ wobedi nipadua no dwumadi so: Sɛ nhwɛso no, ɔkɔm ne sukɔm a wontumi nni so, nna mu haw, nipadua mu hyew a wontumi nkura mu yiye.
• Stunting: Ɔsorokɔ a onni a ɛfata mfe a obi adi, ɛbɛyɛ tiaa koraa sen mmofra afoforo.
• Hypothyroidism: Eyi nso ka nneɛma pii a ɛkɔ so wɔ nipadua no mu.
• Mmabunbere a ɛkyɛ.
• Asikre a ɛwɔ mogya mu a ɛba fam (Hypoglycemia): Eyi betumi ayɛ asiane.
• Tebea a ɛte sɛ asikreyare nanso ɛne asikre nni abusuabɔ, na ɛde nsu a ɛboro so ne sukɔm ba (`(Diabetes Insipidus)`).
• Jaundice: Wora ne aniwa a ɛyɛ kɔkɔɔ, titiriw wɔ nkokoaa a wɔawo wɔn foforo mu.

Fa no sɛ wo babea ketewa no rebɔ mmɔden sɛ ɔbɛhwɛ agode bi, nanso ɛte sɛ nea n’ani ntumi mfa n’adwene nsi biribi so yiye, anaasɛ ɔrewosow kɛkɛ. Anaasɛ ɔfe bere nyinaa, ɛte sɛ nea awɔw wom, na ɔrennom nufusu yiye. Sɛ wuhu biribi te sɛ eyi a, ɛsɛ sɛ wokɔ oduruyɛfo nkyɛn ntɛm ara.

So Optic Nerve Hypoplasia betumi ama obi ani afura koraa?

Wɔ tebea horow bi mu no, yiw. Saa tebea yi betumi ama obi nhu ade kɛse anaasɛ n'ani afura koraa mpo . Ɔkwan foforo so no, mmofra binom wɔ aniwa mu haw a emu nyɛ den nkutoo. Ɛtɔ mmere bi a, bere a abofra no nyin no, saa sɛnkyerɛnne ahorow yi bi (te sɛ nystagmus) betumi atew. Wo duruyɛfo betumi akyerɛ wo sɛnea tebea yi bɛka wo ba no pɛpɛɛpɛ.

Dɛn ne nea enti a tebea yi ba?

Nhwehwɛmufo da so ara nnim nea ɛde Optic Nerve Hypoplasia ba ankasa. Nanso, wosusuw sɛ nneɛma a atwa yɛn ho ahyia ne awosu mu nneɛma a wɔaka abom na ɛde ba. Sɛ nhwɛso no, ebia tebea no ne fetal alcohol syndrome (FAS) a ɛna no nom nsa bere a ɔyem no na ɛde ba no wɔ abusuabɔ.

Ɛwom sɛ wontumi nhu awosu mu ade a ɛde ba bere nyinaa de, nanso wɔ tebea horow bi mu no, awosu mu nsakrae (`(Mutations)`) betumi aka eyi. Saa awosu mu nsakrae yi fi awo mu sɛ `(Autosomal Recessive)`, a ɛkyerɛ sɛ sɛ abofra no nya saa awosu mu nkwaadɔm a wɔasesa yi fi ɛna no ne agya no nyinaa hɔ nkutoo a, na obetumi anya saa tebea yi. Awosu mu nkwaadɔm a ebia ɛka ho no bi ne:

• `(HESX1)`
• `(SOX2)`
• `(SOX3)`
• `(OTX2)`
• `(PROKR2)`
• Awosu mu nkwaadɔm afoforo a wonnya nhuu.

Dɛn ne asiane ahorow a ɛde Optic Nerve Hypoplasia ba?

Asiane ahorow bi wɔ hɔ a ebetumi ama tebea yi aba. Eyinom ne nneɛma a ɛtaa ka ɛna no bere a wanyinsɛn:

• Ɛna mfe a ennu mfe 19.
• Sɛ́ wonyinsɛn nea edi kan.
• Obi a ɔwɔ abusua no mu (abusua a wɔwoo no) anya saa tebea yi pɛn.

Sɛ worefi abusua ase anaasɛ worehwɛ abofra foforo kwan a, ɛho hia yiye sɛ wobɛkɔ ayaresabea ahorow a wɔhwɛ wɔn ansa na wɔawo no daa. Eyi bɛboa wo ma wo ne wo ba a ɔhyɛ yafunu mu no nyinaa anya akwahosan pa.

Dɛn ne nsɛnnennen a ɛwɔ tebea yi mu?

Nsɛnnennen a ɛwɔ optic nerve hypoplasia mu no gu ahorow, na egyina amemene no fã a ɛka no so. Ebia nsɛnnennen bi ne:

• Sɛnea wontumi nni nipadua mu hyew so.
• Ɔkɔm ne sukɔm a ɛboro so (`(Hyperphagia)`) na ɛno nti kɛseyɛ mmoroso (`(Obesity)`).
• Aduan ho akɔnnɔ a ɛyera anaasɛ pow a wɔpow sɛ obedi (`(Hypophagia)`).
• Nneɛma a ɛnkɔ so daa wɔ nna ne nyane kyinhyia mu.
• Nkɔsoɔ a ɛkyɛ: Eyi kyerɛ sɛ ɛkyɛ wɔ nipadua no mu ahoɔden (te sɛ nantew ne ɔwea) ne nkitahodi ho nimdeɛ (te sɛ nkitahodi ho nimdeɛ).
• Autism Spectrum Disorder (ASD) a ɛma obi nya ɔyare a ɛma obi nya ɔyare.

Saa nsɛnnennen yi bi, titiriw ɔhaw ahorow a ɛfa nipadua mu hyew a wɔhwɛ so ne aduan a wɔde ma ho no betumi de nkwa ato asiane mu wɔ tebea horow bi mu, enti ɛsɛ sɛ wɔhwɛ yiye kɛse.

Ɔkwan bɛn so na wohu sɛ obi anya Optic Nerve Hypoplasia?

Mpɛn pii no, aniwa ho oduruyɛfo na ohu saa tebea yi bere a wɔayɛ aniwa mu nhwehwɛmu ne nhwehwɛmu afoforo awie no. Mpɛn pii no, eyi ho sɛnkyerɛnne a edi kan ne aniwa a ɛkeka ne ho wɔ ɔkwan a ɛnteɛ so. Wobetumi ahu saa sɛnkyerɛnne yi wɔ asram kakraa a edi kan wɔ akokoaa awo akyi. Nanso, ɛtɔ mmere bi a, ebia ɛrenna adi kosi sɛ abofra no bɛhyɛ sukuu mfe mu anaasɛ obesua.

ONH nkutoo betumi aba, a ɛkyerɛ sɛ ɛnka amemene no afã afoforo. Anaasɛ, aniwa ntini no akyi no, wobetumi ahu sɛ ɛwɔ nkɔso ho haw biako anaa nea ɛboro saa wɔ amemene no mfinimfini ne pituitary gland no mu.

Nea ɛbɛyɛ na oduruyɛfo no asi nea wɔahu no so dua no, obetumi ahyɛ sɛ wɔnyɛ mfoninitwa nhwehwɛmu te sɛ MRI (Magnetic Resonance Imaging) anaa CT scan (Computed Tomography scan). Saa mfonini ahorow yi boa oduruyɛfo no ma ohu sɛnea wo ba no amemene reyɛ kɛse no ho adwene pa.

Bio nso, wobetumi ayɛ mogya mu nhwehwɛmu mpɛn pii. Wɔyɛ eyinom de yi tebea afoforo a ɛwɔ sɛnkyerɛnne a ɛte saa ara fi hɔ. Sɛ nhwɛso no, wobetumi ahwɛ serum cortisol ne onyin hormone dodow. Ebia eyinom yɛ nea ɛnteɛ wɔ ONH mu.

So wobetumi asa Optic Nerve Hypoplasia?

Nea ɛyɛ awerɛhow no, mprempren wonni saa tebea yi ano aduru. Esiane sɛ ɛyɛ tebea a wɔde awo obi nti, wontumi nsan n’akyi anaa nsan mfa mma bio.

Enti wodi eyi ho dwuma dɛn?

Ayaresa no atirimpɔw ne sɛ wobedi abofra no yare no ho sɛnkyerɛnne so na ama wanya ahotɔ. Eyi betumi ayɛ soronko wɔ onipa biara ho. Ayaresa atitiriw no ne:

• Anisoadehu Ho Ayaresa:Mfiri a ɛboa wɔ aniwa mu haw ho, te sɛ ahwehwɛ soronko ne ahwehwɛ a ɛma ade kɛse (`low-vision aids`) a wɔde bedi dwuma de aboa abofra no ma wayɛ da biara da nnwuma.
• Hormone Replacement Therapy: Sɛ hormone a enni nipadua no mu esiane ɔhaw ahorow a ɛwɔ pituitary gland no mu nti a, wɔde hormone ahorow ma wɔ akyi. Nnuru titiriw bi wɔ hɔ a wɔde yɛ eyi.
• Apɔw-mu-teɛteɛ, Adwuma mu Ayaresa, ne/anaasɛ Ɔkasa mu Ayaresa: Saa ayaresa ahorow yi boa ma abofra nipadua mu nkɔso tu mpɔn, sɛnea otumi yɛ da biara da nnwuma a ɔde ne ho, ne ɔkasa ho nimdeɛ tu mpɔn.

Oduruyɛfo no bɛkyerɛ ayaresa ko a eye ma wo ba no na wayɛ ayaresa nhyehyɛe a ɛfata. Ɛdenam wo ba no yare no ho sɛnkyerɛnne afoforo so no, ebia ayaresa pɔtee afoforo ho behia.

Sɛ ɛho hia sɛ wode nnuru ma wo ba a, bisa wo duruyɛfo no yiye wɔ bere a ɛsɛ sɛ wode aduru no ma, dodow a ɛsɛ sɛ wode ma, sɛnea ɛsɛ sɛ wode ma, ne nsunsuanso bɔne a ɛsɛ sɛ wuhu ho asɛm.

Abofra no daakye bɛyɛ dɛn wɔ tebea yi mu?

Nkɛntɛnso a Optic Nerve Hypoplasia de ba no gu ahorow kɛse wɔ onipa biara mu. Wobetumi ahu sɛnkyerɛnne ahorow bi wɔ nkokoaabere mu, bere a afoforo nso betumi ada adi wɔ mmofraase anaa mmerantebere ne mmabaabere mu. Asɛmpa no ne sɛ tebea yi nyɛ nea ɛkɔ so. Eyi kyerɛ sɛ tebea no nsɛe bere kɔ so . Nsɛnkyerɛnne bi te sɛ nystagmus mpo betumi atu mpɔn bere a obi nyin no.

Mmofra a wɔwɔ ONH no hia sɛ awofo, wɔn a wɔhwɛ wɔn, ne nnuruyɛfo hwɛ wɔn so bere tenten na wɔhwɛ wɔn. Ɛsɛ sɛ wɔhwɛ wɔn so daa hwɛ sɛ wɔn akwahosan ye. Anyɛ yiye koraa no, ɛsɛ sɛ wɔyɛ wɔn aniwa mu nhwehwɛmu pɛnkoro afe biara na wohu nnuruyɛfo afoforo a wɔyɛ adwumaden sɛnea ɛho hia.

Ɛwom sɛ ɔhaw a emu yɛ den a ɛwɔ pituitary gland no ho betumi de nkwa ato asiane mu de, nanso sɛ wohu yare no na wɔsa no ntɛm a, nea eye sen biara betumi afi mu aba.

So wobetumi asiw Optic Nerve Hypoplasia ano?

Mprempren ɔkwan biara nni hɔ a wonim a wɔbɛfa so asiw tebea yi ano. Sɛ woreyɛ nhyehyɛe sɛ wubenyinsɛn a, ɛbɛyɛ papa sɛ wobɛkɔ awosu ho ɔfotufo anaa obi a ɔhwɛ awo ansa na woawo no nkyɛn na wasua pii afa asiane ahorow a ɛde wo ba ne sɛnea wobɛkɔ so anya apɔwmuden ho.

Bere bɛn na ɛsɛ sɛ mekɔ oduruyɛfo nkyɛn?

Sɛ wo ba no ani nhwɛ wo yiye, ɛnyɛ pɛpɛɛpɛ, anaasɛ ɛkeka ne ho wɔ ɔkwan soronko so a , kɔ oduruyɛfo nkyɛn ntɛm ara. Afei nso, sɛ wo ba no ntumi nkɔ nkɔso mu nsɛntitiriw ahorow (sɛ nhwɛso no, ɔrewea, ɔrewea, anaasɛ ɔrekɔfa nneɛma bi) a ɛfata ne mfe a, ka kyerɛ wo duruyɛfo .

Sɛ wo ba no nya akisikuru a, frɛ 911 ntɛm ara anaa fa wɔn kɔ ayaresabea dan a ɛbɛn hɔ a wɔhwɛ ntɛmpɛ so.

Nsɛm bɛn na ɛsɛ sɛ mibisa oduruyɛfo no?

Wubetumi abisa wo duruyɛfo nsɛm te sɛ eyinom:

• Mɛyɛ dɛn aboa me ba ma wadi ne yare no ho sɛnkyerɛnne ahorow ho dwuma?
• Sɛ mihu sɛ me ba no nni nkɔso mu nneɛma atitiriw bi a, dɛn na ɛsɛ sɛ meyɛ?
• So me ba hia ahwehwɛ anaa nneɛma foforo a ɛboa ma ohu ade?
• Tebea `(ONH)` no bɛka me ba no dɛn bere a wafi sukuu ase no?
• Mpɛn ahe na ɛsɛ sɛ wɔyɛ me ba no aniwa mu nhwehwɛmu?

Nea etwa to no, nneɛma a ɛsɛ sɛ yɛkae

Sɛ́ ɔwofo no, ɛyɛ ade a ɛfata sɛ wo ba no ani kyinkyin na ɛnhwɛ wo yiye a, wobɛte ahodwiriw ne ehu nka. Tebea bi a wɔfrɛ no Optic Nerve Hypoplasia betumi aka sɛnea wo ba no betumi ahu wo yiye. Ebetumi aka amemene no afã afoforo a ɛboa wɔ dwumadi ahorow a ɛho hia te sɛ hormone a wɔyɛ ne nipadua mu nkɔso nso.

Nanso kae sɛ ɛnyɛ wo nkutoo na wowɔ. Oduruyɛfo betumi ahwehwɛ wo ba no mu, ahu sɛ ɔwɔ yare no, na ɔde ayaresa nhyehyɛe a ɛne wɔn yare no ho sɛnkyerɛnne pɔtee hyia ama.

Ɛyɛ ade a ɛfata sɛ mmofra hia mmoa kakra wɔ sukuu mu sen mmofra afoforo, titiriw sɛ wɔregye bere kakra ansa na wɔanyin sen afoforo a. Sɛ wuhu sɛnkyerɛnne bi a ɛhaw adwene a ɛreka wo ba no nyin anaa ne nyin a, ntwentwɛn wo nan ase sɛ wobɛka akyerɛ wo duruyɛfo. Wo ba no aduruyɛ kuw no ayɛ krado bere nyinaa sɛ wobebua nsɛmmisa biara a ebia wowɔ. Sɛ wunya akokoduru a, wubetumi ama wo ba no ɔhwɛ a eye sen biara a ohia.

` optic nerve hypoplasia, septo-optic dysplasia, awo mu anifurae, aniwa a enhu ade yiye, pituitary gland, mmofra nkɔso, nystagmus