“Folk förstår inte att du kan se dig själv bra och leva med en kronisk sjukdom med intensiva smärtor”

Ashleigh Harley har en invaliditet som inte alltid är uppenbar, men det orsakar intensiv smärta och låter henne inte äta fasta livsmedel

"Folk förstår inte att du kan se bra och leva med en kronisk sjukdom med intensiva smärtor"

Ashleigh Harley har en funktionshinder som inte är uppenbart vid första anblicken.

Ashleigh Harley passar perfekt i rollen som modell, influenser av sociala nätverk, spirande författare och filmskapare med hennes blonda hår, unga hud och bruna ögon.

Det är just det problem han ville prata om i en ny dokumentär.

Ashleigh är en av de miljoner människor som lever med en  dold handikapp .

I ditt fall det är en sällsynt sjukdom som kallas  syndrom  Ehlers-Danlos ( ED) , vilket kan orsaka svår smärta, svaghet i muskler och senor, och kan orsaka lederna att rubba ..

  • “Polisen, skjut inte: Jag är handikappad”

“Det finns 13 olika typer av SED,” förklarar Ashleigh. “Och det finns 255 miljoner människor i världen med alla olika undertyper. Resultatet är en mycket dåligt förstådd sjukdom. “

Hon  var knappt  12 år gammal  när hon diagnostiserades med SED, något som hände efter månader av rundresor mellan London, där hennes familj tog henne för att se specialistläkare och hennes hem i centrala England.

“För att vara ärlig var det ganska läskigt,” förklarar han, “för i början visste vi inte vad som hände när sjukdomen började. Jag var blind och förlamad i några dagar . Vi var alla väldigt rädda. “

Ashleigh Harley på hennes häst

Ashleigh är ett fan av hästhästar.

“Men samtidigt var det lättnad att ta reda på vad det var som jag hade. Nu handlar det om att kontrollera det. “

Det finns inget botemedel mot denna sjukdom, så “kontrollerande” innebär att man tar ett stort antal dagliga mediciner och varar de smärtsamma symptomen.

” Jag kan inte äta fast mat  och idag har jag inte ens kunnat dricka vatten eftersom jag fortsätter att kasta upp. Det är faktiskt svårt för läkare att ordinera mediciner som jag kan tolerera eftersom jag har allergier mot intravenösa droger. “

Deformationen i hennes ryggraden orsakades också av sjukdomen, vilket ibland tvingar henne att använda kryckor för att gå långt.

Fysiska problem som orsakar honom till Ashleigh SED är  lidit två är ofta  en dörr s slutna s . Detta har lett till att man kände sig diskriminerad när människor kommenterar hur bra det ser ut.

“Jag säger:” Jo, du såg mig inte kasta upp i morse. ” Folk förstår inte att  du kan se bra ut  och  leva med en  kronisk  sjukdom . “

Ashleigh, som skrev och regisserade en kortfilm science fiction som kallas  The Wall i Lyon  (The Wall Lyon), som visades på filmfestivaler runt om i världen, arbetar nu med en ny film,  The Dark Horse (The Black Horse ), vars syfte är att bekräfta deras funktionshinder.

Medicin och solglasögon

Det finns funktionshinder som inte är så uppenbara.

Han säger att det tog honom lång tid att hitta förtroendet att prata om hans tillstånd.

“De trakasserade mig mycket för att jag var sjuk, ” säger hon om sin barndom. “Som ett resultat av det kände jag mig rädd för att berätta för någon. Men då insåg jag att det inte fanns någon anledning att försöka vara något du inte är. “

“Så det var dags att stå upp och säga att detta var sanningen.”

Paralympiska hästspring

En del av den nya filmen fokuserar på Ashleigh försöker få  ridsport hoppning är reconocid eller som en paralympiska idrotten .

Ridhändelserna ingick i Paralympic Games för första gången 1996 i Atlanta och är öppna för idrottare med någon form av fysisk eller visuell funktionsnedsättning.

Men disciplinerna är begränsade till träningsevenemang, ett mästerskap av etablerade rörelser och ett freestyle-test med musik.

Det brittiska laget har varit mycket framgångsrikt på fältet och vann över 30 guldmedaljer.

Ashleigh, passionerad att hoppa eftersom hon var liten, säger att  denna sport hjälpte henne att klara av hennes sjukdom .

“Jag ville övervinna mina fysiska begränsningar. Jag tror att många människor i min situation vill ha det, säger han. “En dag gick jag till mina föräldrar och sa:” Jag vill verkligen åka. “

“Jag insåg att trots mina begränsningar kan jag fortfarande klättra och hitta ett sätt att övervinna hinder.”

Efter att ha meddelat sina avsikter på Facebook, säger han att han har fått meddelanden från hela världen.

“[De] är desperata att tävla i para – jump , men helt enkelt inte har möjlighet att göra det eftersom  hans land kommer inte  att ge stöd till denna  sport “.

Enligt Ashleigh, för International Paralympic Committee (ICC) att erkänna sport, krävs det att mer än 30 länder regelbundet anordnar tävlingar.

Det är en herlig uppgift, men Ashleigh är övertygad om att det kan göras.

“För närvarande har vi Storbritannien, Tyskland, Frankrike och Irland. Och det har också varit mycket intresse för USA och Ryssland. “

Ashleigh Harley och den olympiska facklan

Ashleigh Harley vill få sin favorit sport som ingår i paralympiska spelen

Och i slutet av månaden börjar vi prata med KPI om det.

Deras ansträngningar har applåderas av British Hoppning och dess verkställande direktör, Iain Graham, sade han: “Ashleigh är otroligt inspirerande, inte bara för det sätt han vägrar att låta hans handikapp sluta att delta i sporten han älskar, men också av sin önskan att göra reklam för tävlingen att hoppa struktur som vi har fastställts för likasinnade människor att delta i den. “

“Med Ashleighs passion och vision för att få andra nationer att delta, kan vi vara på rätt väg för att få det tidigare än vi förväntade oss.”

  • “Min funktionshindrade son hade ett fantastiskt hemligt liv på internet”

Även om Ashleigh är det slutliga målet, är erkännandet av det paralympiska hoppet klart viktigt. vad händer på vägen också.

“Vad jag skulle vilja att se är att folk börjar  titta runt  utan  kände ner liv  andra verkligen  är  bättre “.

“Det skulle vara svårt att mäta, men om jag kunde ändra det till och med lite, skulle jag vara glad”

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