“Hey, koop eens een bril”
“Hallo, de zon schijnt niet hoor !”
“Herken je me niet?”
– Lastig om uit te leggen dat je zonder zonnebril, ook bij normaal licht, echt geen klap ziet.
Hoe komt dit dan ?
In praktijk betekend dit dat sommige stukjes netvlies redelijk normaal functioneren, maar andere totaal niet, Samen met een bijzonder grote pupil zorgt dit tevens voor een stevige vorm van Fotofobie, oftewel overgevoelig voor licht ( vandaar altijd de zonnebril+pet )
Wat kan ik hierdoor niet meer ?
– Iets vinden wat ik heb laten vallen, is zeer lastig, zeker als het ook nog eens een voorwerp betreft wat qua kleurtint overeen komt met de grond.
– Zonder zonnebril naar buiten bij daglicht, zonder dit hulpmiddel is alles dermate overbelicht dat kijken praktisch onmogelijk is.
– Een ruimte binnenlopen, en alle mensen direct herkennen, dat is praktisch onmogelijk. Er zijn momenten dat ik de creche of BSO van mijn kinderen binnenloop, en mijn kinderen niet kan vinden of herken, leg dat maar eens uit …
Maar wat kan nog wel ?
Eigenlijk kan alles, hetzij met wat moeite of hulpmiddelen nog wel, maar er zijn een aantal dingen die ik vermijd of gewoonweg niet meer moet doen :
– S’nachts, zeker bij slecht weer (regen) en onbekend terrein autorijden.
– Lange stukken autorijden, na ca een uur is het te intensief.
– s’avonds, dingen doen die intensief voor de ogen zijn, de ogen/hersens zijn dan dermate vermoeid dat dit niet meer gaat.
– Motorrijden, al zou ik op sommige dagen prima verantwoord een ritje op een oldtimer kunnen maken, in veel gevallen is zelfs een brommer al niet meer te doen kwam ik achter.
– Ga je vanavond mee naar dat feestje ? nou liever niet om eerlijk te zijn, ik kan de gezichten nier meer lezen, krijg hoofdpijn, wordt duizelig, moet “knijpen met mijn ogen” waardoor het eruit ziet alsof ik stik chagerijnig ben, en ik heb last van dingen waar andere mensen niet bij stil staan, lampen, TV schermen, flitsen van foto toestellen etc. Gezellig is anders …
– Wat wel bijzonder is, is dat ik een groter gezichtsveld heb dan de meeste mensen, ik zie ook scherper uit mijn ooghoeken dan anderen heb ik het idee, kan ik recht voor me iets compleet over het hoofd zien, vanuit mijn ooghoeken zie ik best veel, dat geeft ook soms irritatie, wanneer ik iets op TV probeer te volgen, maar naast mij beweegt iets, dan is dat super irritant, zo ook met autorijden …
– Ook heb ik het idee dat ik ( iig vroeger ) in complete duisternis, beter uit de voeten kan dan de meesten, doordat de ogen erg gevoelig zijn voor licht waarschijnlijk, maar nadeel is weer dat het minste of geringste lichtje me dan weer verblind.
Maar hoe heet dat dan ?
Hoe heet het ? tja, da’s een goeie… Uit genetisch ( DNA ) onderzoek is gebleken dat ik en mijn zuster een unieke Gen afwijking hebben met deze ogen als resultaat. Er is geen naam aan deze afwijking/ziekte gegeven. Het is wat een aantal symptomen betreft vergelijkbaar met “macula degeneratie”, en ook “kegeldystrofie”. De vervorming, kleurenblindheid, overgevoeligheid voor licht en uitval van stukken netvlies zijn zaken die ook patienten met bijvoorbeeld de ziekte van stargardt herkennen
“Ik heb slechte ogen” voldoet meestal niet, omdat mensen dat associëren met een bril, ( ik draag overigens contactlenzen , want heb ook dioptrie -4 aan beide ogen ) en aangezien ik geen bril op heb, is de standaard reactie dat ik “maar eens een bril moet kopen dan”. Roepen dat ik blind ben, dat gaat er ook niet in, want ik rijdt immers in een auto, en kan prima een kentekenplaat oplezen van een auto die 25 meter verderop rijdt. “Mijn netvlies is niet goed, ik zie niet zo goed” is meestal wat ik zeg, echter komt hier altijd het volgende op terug als reactie :
En kunnen ze daar niks aan doen ofzo ?
Nou, nee en geen idee, een bril maakt niets uit ( een extreem goede zonnebril is overigens een wereld van verschil !! ) , maar voor een defect netvlies bestaat vooralsnog geen oplossing.
En wordt het ook erger ?
Nogal ja, in 1995 was ik die jongen die wat kleurenblind was, en het liefst een zonnebrilletje droeg. in 2005 was een zonnebril al onmisbaar, en begon het met dingen niet kunnen zien ( vogel in de lucht etc ), in 2015 begint alles serieus te vervormen, en begint het invloed te hebben op dagelijks leven ( vermoeid, hoofdpijn, dingen moeten laten vanwege ogen ).
De oorzaak van dit alles is een zeer zeldzame genetisch mutatie, C8orf37 om precies te zijn. Door een vautje in dit gen, zijn mijn ogen wat ze zijn.
Ik heb mee gedaan aan een studie, lees hier de resultaten
Ook is de ziekte genoemd op een site over “zeldzame ziektes”
Scheel en dubbelzien.
Los van bovenstaande, of misschien is het een indirect gevolg, wie zal het zeggen, kijk ik sinds een tijd dubbel, erg dubbel. Mijn ogen staan naar buiten, ( diplopie ) . Dit is super vermoeiend, en zorgt voor duizeligheid/misselijkheid ( vergelijkbaar met wagenziekte ), en lezen is erg lastig.
Gelukkig is dit te opereren, dus verwacht ik binnenkort een operatie waarbij de oogballen weer even uitgelijnd worden.
UPDATE nov 2021 : geopereerd, en de oogjes staan weer recht, helaas zie ik nog wel dubbel
UPDATE 2023 : Het dduubbbbeeeellll zien is er niet beter op geworden, sterker nog, het wordt erger, naast een horizontale afwijking is er nu ook een verticale afwijking.
Samen met de orthoptiste S. van Oostveen-Miedema (MCL) tot de conclusie gekomen, dat de vervorming van de retina in mijn rechteroog waarschijnlijk bijdraagt aan het langer kunnen produceren van 1 homogeen beeld in de hersenen.
Prisma folie, en aangepaste brillen helpen voor korte moment, waardoor ik nog korte stukjes auto kan rijden, maar na langere tijd concentreren ( ook tijdens werk ) wordt het steeds lastiger, met veel hoofdpijn en extreme vermoeidheid tot gevolg.
ik wist niet dat ze zo in elkaar zaten, WOW. dat jij ook nog verhalen kan lezen!
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