So wo ba no wɔ akisikuru wɔ ne koma mu? Momma yensua Cardiac Rhabdomyoma ho ade!

Sɛ́ ɛna anaa agya no, sɛ wususuw wo ba kumaa no akwahosan ho a, ade ketewaa bi mpo te nka sɛ ɛyɛ kɛse, ɛnte saa? Titiriw sɛ oduruyɛfo ka sɛ, "Biribi te sɛ akisikuru ketewaa bi wɔ wo ba koma mu" a, ebetumi ayɛ awerɛhow. Nanso mma ɛnhaw wo . Ɛnnɛ yɛbɛka tebea bi a wote ho asɛm wɔ mmere te sɛ eyinom mu, nanso mpɛn pii no ɛnyɛ asiane ho asɛm. Ɛno ne Koma mu Rhabdomyoma .

Dɛn ne Koma mu Rhabdomyoma?

Sɛ yɛbɛka no tiawa a, koma mu rhabdomyoma yɛ akisikuru a ɛnyɛ kokoram a ɛnyɛ kokoram a ɛba wo ba no koma ntini mu . Eyinom ho yɛ na koraa. Nanso, nea ɛyɛ nwonwa no, wɔyɛ koma mu akisikuru a ɛtaa ba wɔ awotwaa no fã, kyerɛ sɛ, bere a akokoaa no da so ara wɔ ɛna no awotwaa mu (`nyinsɛn`). Mpɛn pii no, koma mu rhabdomyomas yi pue bere a akokoaa no da so ara wɔ awotwaa mu anaasɛ wɔ n’asetra afe a edi kan no mu.

Saa akisikuru yi fi koma ntini no ankasa mu. Nea ɛyɛ soronko ne sɛ mpɛn pii no ɛnyɛ wɔn nkutoo na wohu wɔn, na mmom wɔyɛ wɔn akuwakuw . Eyi na ɛma wɔda nsow wɔ fibromas, akisikuru foforo a asiane biara nni ho a ɛba koma no mu no ho. Efisɛ fibromas nso fi koma ntini no ankasa mu, nanso ɛsɔre sɛ akisikuru biako, na ɛnyɛ akuwakuw.

Nea ɛho hia ne sɛ koma mu rhabdomyomas nyɛ ɔyare bɔne anaa kokoram . Eyi kyerɛ sɛ wɔntrɛw nkɔ nipadua no afã afoforo. Ɔkwan biako pɛ a wobetumi afa so ayɛ asiane ne sɛ esiw wo ba no koma dwumadi kwan sɛnea ɛsɛ. Nanso ɛno ho yɛ na koraa. Mpɛn pii no, saa akisikuru yi twetwe na ɛno ankasa kɔ na ɛmfa ɔhaw a emu yɛ den mma.

Saa akisikuru yi betumi ayɛ abofra koma nifa anaa benkum. Wɔtaa hu wɔn wɔ koma no ase adan mu , nifa so ahurututu anaa benkum so . Ɛtɔ mmere bi nso a, wotumi nyin wɔ koma no atifi adan, atria , anaa ɔfasu a ɛtetew adan abien no ntam no mu. Akisikuru no kɛse betumi ayɛ soronko fi milimita kakraa bi kosi sɛntimita pii. Sɛ wohwɛ aniwa so a, ɛte sɛ nea ɛyɛ kɔkɔɔ anaa fitaa.

Koma mu rhabdomyoma yɛ akisikuru a ɛnyɛ kokoram a ɛnyɛ kokoram a ɛyɛ akuwakuw wɔ koma ntini no mu.

Hena na ɛda adi sɛ obenya eyi?

Nkokoaa ne mmofra a wɔwɔ awosu mu yare bi a wɔfrɛ no tuberous sclerosis no wɔ asiane kɛse mu sɛ wobenya koma mu rhabdomyomas. Nokwarem no, mmofra 10 biara mu bɛyɛ 8 a wɔwɔ koma mu rhabdomyomas nso wɔ tuberous sclerosis. Tuberous sclerosis nso yɛ awosu mu tebea a ɛntaa nsi koraa. Sɛ nhwɛso no, ɛka mmofra a wɔawo wɔn foforo 6,000 biara mu bɛyɛ 1 wɔ United States.

Nhwehwɛmu nhuu adanse biara a ɛkyerɛ sɛ ɔbarima ne ɔbea nna, abusuakuw, anaa abusuakuw a obi fi mu nya tebea yi a ɛba no so nkɛntɛnso.

Saa tebea yi abu so dɛn?

Koma mu rhabdomyomas ne koma mu akisikuru a ɛtaa ba nkokoaa ne mmofra nkumaa so . Nanso, ne nyinaa mu no, koma mu akisikuru ho yɛ na araa ma wobu koma mu rhabdomyomas sɛ ɛho yɛ na . Akuru a efi ase wɔ koma no ankasa mu (a wɔfrɛ no `primary cardiac tumors`) ka nnipa a ennu 2,000 biara mu biako.

Dɛn nti na koma mu rhabdomyoma ba?

Wosusuw sɛ awosu mu nsakrae a ɛba ansa na wɔawo obi na ɛde koma mu rhabdomyomas ba . Saa awosu mu nsakrae yi nso de tebea bi a wɔfrɛ no tuberous sclerosis ba. Nnipa a wɔwɔ tuberous sclerosis no wɔ nkwaadɔm mu nsakrae wɔ awosu mu nkwaadɔm `TSC1` anaa `TSC2` mu. Awosu mu nkwaadɔm abien yi dwumadi titiriw ne sɛ ɛbɛhwɛ ma akisikuru a ɛba nipadua no mu no so. Enti, mmofra pii a wɔwɔ koma mu rhabdomyomas nso wɔ tuberous sclerosis.

Nanso, mmofra binom betumi anya koma mu rhabdomyoma a tuberous sclerosis nni mu. Wɔ tebea horow a ɛtete saa mu no, wonnya nhuu nea ɛde akisikuru yi ba ankasa .

So eyi yɛ biribi a efi awo mu ba? So ɛyɛ awosu mu?

Mpɛn pii no, koma mu rhabdomyoma yɛ nea wonya fi awo mu . Enti, wobu no sɛ efi awo mu. Nanso, ɛnyɛ ade koro ne agyapade a wonya fi awo mu . Sɛ tebea bi fi awosu mu a, wobetumi afa abusua mu awosu mu akɔ.

Koma mu rhabdomyoma betumi afi awosu mu, nanso ɛnyɛ nea ɛtaa ba. Nea enti a ɛte saa ne sɛ awosu mu tebea a wɔfrɛ no tuberous sclerosis a ɛne akisikuru yi wɔ abusuabɔ no taa ba ara kwa, a awosu mu abusuabɔ biara nni mu.

Ɔwofo a ɔwɔ tuberous sclerosis wɔ hokwan 50% sɛ ɔde bɛma ne ba. Nanso, wohu saa "agyapade" yi wɔ ayarefo a wɔwɔ tuberous sclerosis no mu bɛyɛ nkyem abiɛsa mu biako pɛ mu. Wɔ nsɛm afoforo dodow no ara mu no, awosu mu nsakrae no ba nea edi kan wɔ abofra a wɔahu no foforo mu, a onni abusua abakɔsɛm biara. Eyi kyerɛ sɛ ɛtɔ mmere bi a koma mu rhabdomyoma betumi ada adi sɛnea wɔhwɛ kwan, na ɛtɔ mmere bi nso a ɛba kwa a enni kɔkɔbɔ sɛnkyerɛnne biara.

Ebia eyi bɛyɛ te sɛ nea ɛyɛ den, nanso kae sɛ awosu mu nkwaadɔm yɛ asɛm no fã bi kɛkɛ. Sɛ wowɔ nsɛmmisa anaa nsɛm bi a ɛhaw wo wɔ koma mu rhabdomyoma anaa tuberous sclerosis ho a, hwɛ hu sɛ wo ne wo duruyɛfo bɛkasa . Munsusuw w’abusua abakɔsɛm ne sɛnea ebetumi aka wo anaa wo ba no ho.

Dɛn ne eyi ho sɛnkyerɛnne?

Mpɛn pii no, koma mu rhabdomyoma mfa sɛnkyerɛnne biara mma.. Nanso, ɛntaa nsi koraa sɛ sɛ akisikuru anaa akisikuru akuwakuw bi yɛ kɛse a, ebetumi de ɔhaw ahorow aba akokoaa no koma mu na ama wanya yare no ho sɛnkyerɛnne. Sɛ nhwɛso no, akisikuru akɛse betumi asiw mogya no kwan anaasɛ asɛe sɛnea koma no yɛ adwuma. Sɛ eyi ba wɔ nyinsɛn mu a, ebetumi apira akokoaa no kɛse. Ebetumi ama obi anya komayare anaasɛ tebea bi a emu yɛ den a wɔfrɛ no hydrops .

Mpɛn pii no, wo duruyɛfo de mfoniniyɛ mu nhwehwɛmu bɛhwɛ sɛ ɔhaw ahorow yi wɔ nyinsɛn mu anaa.

Sɛ saa akisikuru yi a ɛwɔ nkokoaa ne mmofra nkumaa mu no ankasa ankɔ na ɛkɔ so, anaasɛ ɛyɛ kɛse a, ebetumi ama koma no ayɛ adwuma yiye anaasɛ koma abɔ no yiye (arrhythmias). Eyi nso ho yɛ na koraa. Nanso wo ba no duruyɛfo bɛhwɛ tebea yi so ahwɛ sɛ ɔhaw bi sɔre anaa.

Sɛ wo ba da sɛnkyerɛnne a edidi so yi bi adi a, frɛ 1990 ntɛm ara, anaa fa no kɔ ayaresabea a ɛbɛn no:

• Nsakrae a ɛba koma mu nnyigyei mu.
• Koma a ɛbɔ ntɛmntɛm ( tachycardia ).
• Ɔhome a ɛyɛ den anaasɛ ɔhome a ɛyɛ tiaa, titiriw bere a ɔda fam ( dyspnea ).
• Koko mu yaw anaasɛ ɛyɛ den a ɛnam tena ase so tew.
• Ɛwa.
• Adwene a ɛyɛ basaa anaasɛ obi a ɔtotɔ piti.
• Ɔbrɛ anaa mmerɛwyɛ a wɔte nka.
• Nan, anan, anaa yafunu a ɛho ahonhon.

Wobɛyɛ dɛn ahu eyi?

Wɔnam mfoninitwa nhwehwɛmu so hu koma mu rhabdomyoma . Wobetumi ayɛ nhwehwɛmu ahorow yi wɔ nyinsɛn mu anaa bere a wɔawo akokoaa no akyi.

Nhwehwɛmu ahorow a wɔyɛ de hu koma mu rhabdomyoma

Mpɛn pii no, wodi kan hu saa akisikuru yi bere a wɔreyɛ ultrasound scan ansa na wɔawo bere a wɔyem no. Saa akisikuru yi fi ase da adi wɔ ultrasound mu wɔ nyinsɛn no adapɛn 20 kosi 30 ntam. Wobetumi de mfonini titiriw bi a wɔfrɛ no fetal echocardiogram nso ahu . Eyi nso yɛ ultrasound bi, nanso ɛhwehwɛ ɔhaw biara a ɛwɔ koma no mu bere a akokoaa no renyin wɔ awotwaa no mu no pɔtee.

Sɔhwɛ ahorow a wɔde hu koma mu rhabdomyoma na wɔsɔ hwɛ bere a wɔawo akokoaa akyi no bi ne:

• Electrocardiogram (EKG/ECG) .
• Echocardiogram (asɛm a ɛyɛ dɛ) .
• Magnetic Resonance Imaging (MRI) a Wɔde Yɛ Nneɛma a Wɔde Yɛ Adwuma (MRI) .

Ebia ɛho behia sɛ wo ba no yɛ nhwehwɛmu daa, te sɛ EKG anaa echo. Oduruyɛfo no bɛhwɛ akisikuru no so ahwɛ sɛ n'ankasa so tew anaa . Ɛho behia sɛ wɔsa cyst biara a ɛnyɛ n’ankasa nkɔ.

Wɔtaa di mfomso bu koma mu rhabdomyoma sɛ ɛyɛ tuberous sclerosis.Ebia ɛbɛyɛ yare no ho sɛnkyerɛnne a edi kan. Enti, ebia ɛho behia sɛ wɔyɛ nhwehwɛmu foforo de hwɛ sɛ ebia abofra no wɔ tuberous sclerosis ho sɛnkyerɛnne wɔ nipadua no afã afoforo anaa.

Sɛ wohu sɛ wo ba no anya tuberous sclerosis a, wo ne wo duruyɛfo nkasa mfa awosu mu nhwehwɛmu ho . Ɛtɔ mmere bi a, awofo betumi anya yare no brɛoo koraa na wɔrenhu sɛ wɔwɔ bi da. Enti, ebia wo duruyɛfo bɛpɛ sɛ ɔhwɛ sɛ wo anaa wo hokafo no wɔ awosu mu nkwaadɔm mu nsakrae a ɛde yare no ba no anaa.

Dɛn ne ayaresa ahorow no?

Asɛmpa no ne sɛ koma mu rhabdomyomas taa twetwe na ɛyera ankasa , enti ɛho nhia sɛ wɔde sa yare biara . Mpɛn pii no, bere a wɔwo akokoaa no, saa akisikuru yi adu nea ɛsen biara. Ɛno akyi no, akisikuru no ankasa so tew , a ɛmma ɔhaw biara mma.

Nanso, ɛntaa mma koraa sɛ saa akisikuru yi siw koma no dwumadi kwan na ehia sɛ wɔsa. Ɛtɔ mmere bi a, eyi betumi asi bere a wɔyem. Wɔ tebea horow a ɛtete saa mu no, ebia ebehia sɛ ɛna no nom nnuru na ama akisikuru no so atew.

Ɛtɔ mmere bi a, ɔhaw ahorow betumi aba bere a wɔawo akokoaa no akyi. Sɛ cyst anaa cyst cluster no ankasa ankɔ , anaasɛ ɛyɛ kɛse a, ebetumi asiw akokoaa no koma dwumadi kwan. Eyi betumi ama koma no ayɛ adwuma yiye anaasɛ koma no ammɔ daa (arrhythmia).

Sɛ saa a, ebia wo ba behia nnuru te sɛ eyinom:

• Nnuru a esiw angiotensin-dannan enzyme (ACE) ano
• Nnuru a ɛma nsu fi nipadua no mu (eyinom yɛ nnuru a eyi nsu a ɛboro so fi nipadua no mu) .
• Nnuru a wɔde ko tia apɔw-mu-teɛteɛ

Wo duruyɛfo ne wo besusuw ayaresa akwan horow ho na waboa wo ma woapaw nhyehyɛe a eye ma wo ba no. Wɔntaa nhia sɛ wɔyɛ oprehyɛn .

Dɛn ne wɔn a wɔwɔ saa tebea yi kwan? (Nsusuwii) .

Nnipa dodow no ara a wɔwɔ koma mu rhabdomyoma no nhia ayaresa . Nanso, sɛ wɔwɔ tebea afoforo te sɛ tuberous sclerosis a, ebetumi aka wɔn daakye akwahosan.

Sɛ wo ba no wɔ tuberous sclerosis a, ebehia sɛ wɔyɛ no aduruyɛ mu nhwehwɛmu ne nhwehwɛmu daa . Wɔ nnipa binom fam no, tebea no nyɛ den koraa, na ebia wɔrenhu. Wɔ afoforo fam no, ebetumi de nsɛnnennen a emu yɛ den aba na aka asetra pa kɛse. Wo duruyɛfo no ne wo bɛka wo ba no ayaresa ahiade pɔtee ne nea ɛbɛba daakye ho asɛm. Mobɛbom ayɛ ɔhwɛ nhyehyɛe a eye sen biara ama mo ba.

Dɛn na ɛsɛ sɛ mibisa oduruyɛfo no?

Wo ne wo duruyɛfo nkasa mfa wo ba no tebea ne n’adwene ho asɛm. Sɛ wohu sɛ wowɔ koma mu rhabdomyoma bere a wonyinsɛn a, ebia wunnim baabi a wubefi ase. Ɛda adi sɛ wo duruyɛfo no bɛkyerɛkyerɛ nneɛma pii mu ansa na woabisa nsɛm mpo. Nanso, ebetumi aboa sɛ wubebisa nsɛm te sɛ eyinom na ama woanya nsɛm pii:

• Yɛbɛyɛ dɛn atumi ahwɛ me ba no rhabdomyoma no so?
• So me ba behia nnuru anaa oprehyɛn?
• So me ba no wɔ tuberous sclerosis?
• Ɔkwan bɛn so na tuberous sclerosis bɛka me ba no?
• So ɛsɛ sɛ meyɛ awosu mu nhwehwɛmu a ɛkyerɛ sɛ mewɔ tuberous sclerosis anaa?
• So wubetumi de me ne kuw bi a wɔboa a wɔboa nnipa a wɔwɔ tuberous sclerosis no abɔ?

Sɛ wuhu sɛ wo ba no wɔ aduruyɛ mu yare bi a, ebetumi ayɛ hu kɛse mpo sen sɛ w’ankasa wubenya bi. Nanso sɛ wunya nsɛm ne nneɛma a ɛfata a, wubetumi aboa wo ba ma wadi tebea no ho dwuma na ne ho atɔ no . Sɛ wo ba no wɔ koma mu yare a, wo ne wo duruyɛfo nkasa na woasua pii. Ebia wo duruyɛfo bɛkamfo ɔkwan bi a wɔfrɛ no “ɔwɛn a wobɛtwɛn,” a nea ɛka ho ne sɛ wobɛhwɛ akuru no so na woahwɛ sɛ wɔn ankasa bɛkɔ anaa . Mpɛn pii no, saa kwan yi nkutoo na ehia. Nanso, sɛ ɛho hia sɛ wɔsa wo yare a, wo duruyɛfo bɛma woahu.

Nsɛm a Wɔaboaboa Ano (Nkrasɛm a Wɔde Kɔ Fie) .

Maame ne Paapa adɔfo, Ɛwom sɛ ebia edin Cardiac Rhabdomyoma no bɛyɛ te sɛ nea ɛyɛ hu de, nanso kae sɛ ɛtaa yɛ akisikuru a ɛnyɛ hu a ɛnyɛ kokoram . Ɛtaa ba nkokoaa so titiriw, na ɛtaa kɔ n’ankasa a wonnya ayaresa biara .

Nea ɛho hia sen biara ne sɛ wobɛma wo ho adwo wo, adi nnuruyɛfo afotu akyi, na wo ne wo duruyɛfo adi nkitaho daa wɔ wo ba no tebea ho. Hu tebea horow a ɛfa ho te sɛ tuberous sclerosis, na yɛ nhwehwɛmu a ɛho hia ne akyi a wodi.

Wopɛ sɛ wo ba no ho tɔ no ntɛm!

` Koma mu Rhabdomyoma, Koma mu Rhabdomyoma, Koma mu Akisikuru, Nkokoaa Koma Yare, Tuberous Sclerosis, Tuberous Sclerosis, Awotwaa mu Koma Yare