Ok so I decided to write this blog as part of my Microtia project “wall of little ears” to help show that actually you are not alone with Microtia and that Microtia really doesn’t stop you from doing anything which may sound like a load of nonsense to some people but actually you can do pretty much anything with Microtia and it really shouldn’t stop you from doing anything .I found out after doing some research some great people to mention in this blog who have Microtia some you may expect others you may not.
Jono Lancaster~
Like most 26 year- olds Jono has a beautiful girlfriend and job that he loves and takes great pride in his appearance. However Jono Lancaster was born with Treacher Collins Syndrome which is a genetic condition which affects the facial bones whilst developing in the mother’s womb and affects 1 in 10,000 in the UK ,Treacher Collins means that Jono has no cheek bones which causes the eyes to droop, Microtia which causes hearing loss . Jono wears a BAHA (bone anchored hearing aid) and has had several operations due to his Treacher Collins syndrome .Jono used to be bullied at school .Now aged 26 Jono is happy about the way he looks and doesn’t want to undergo anymore surgery and is now a patron of jeans for genes day and goes around schools to give talks about being different,Jono has also featured in a few BBC documentaries such as love me love my face, so what if my baby is born like me which have both been shown in countries such as France, Italy, Australia,new zeland,and even Japan .A year before Jono’s first documentary love me ,love my face hit the screens Jono was just an ambitious man with a dream of raising awareness of Treacher Collins syndrome and was nervous about the documentaries coming out which is to be expected with anything like that (I know I would be) ,However although Jono was going through an emotional point in his life at the time he has been overwhelmed by the response from the documentaries and said the BBC and production team did a brilliant job of the documentary .Jono now has people sharing their stories with him all of the time.Despite still getting negative comments from people over social media Jono says that this has made him more determined to keep on doing what he is doing (good on him) and so to me he is one my idols and role models that I look up to and think that the work he does is amazing
Paul Stanley~
Paul Stanley is from the band KISS was born with grade 3 Microtia and is virtually completely deaf in his right ear due to his Microtia as there is no where for sound to enter his ear and in 2009 Paul Stanley was fitted with a hearing aid which has been an ongoing adjustment for Paul as his brain has never had to experience or process sound for his right ear ,Paul found having his hearing aid extremely confusing at first due to not being used to hearing sound with his right ear and described it as suddenly developing another eye in the back of your head and the feeling of weirdness and confusion of that as you wouldn’t usually have an eye in the back of your head (unless you’re a parent of course) .Paul has now become settled with using his hearing aid and has gotten used to having it and feels it has helped to enhance his day-to-day activities .Paul Stanley is often asked if his hearing loss due to his Microtia has ever impacted on his career at all but he feels it is hard to answer as it’s hard to understand what you have missed out on and you don’t miss what you have never had and describes it as like a blind person seeing colours that’s a very personal thing to them .Paul also feels that he may not hear music how other people hear it but he feels he has nothing else that he can compare it to nor did he have anything to compare it to for most of his life until now having his hearing aid since 2009 . Paul says that he has never felt a loss of anything .Paul has no sense of direction of where sound is coming from which is a common thing with Microtia but has no issues in mixing a stereo album and can hear the expanse and width of sound but not the direction of where exactly it is coming from .Paul also says technology has changed greatly since he was a young child and says in particular medicine and hearing health advancements and feels that if there is a way to improve your hearing then to by all means take the initive and do something about it .Young and old alike should be looking after their hearing and using earplugs if are exposed to loud noises for prolonged periods of time because once you lose it you cannot get it back and also being exposed to loud noises for a period of time such as at concerts then Paul feels that you should keep personal listening devices to safe and acceptable levels as he feels there are better ways to listen to things than to damage your health over it .Paul Stanley also says a very important message that he likes to share which is “to those of you who suffer from a form of hearing loss ,take comfort in the fact that many, many great people have succeeded in monumental ways without normal hearing ,or any hearing for that matter” and another one is “Hearing loss may be a small pot hole in the road,but that doesn’t mean it should stop you from getting where you want to go.I am living proof”
Sasha Gardener ~
Sasha Gardener is a reality star and model , she stared in the channel 4 programme dumped .Like many people with Microtia Sasha knew her ear was different but it was only when she was bullied at school between the ages of 12-13 due to her ear looking different that she realized just how different her ear actually was .Sasha like all people with Microtia struggled a lot with her hearing and had to constantly ask people to repeat things which she found to be really humiliating and embarrassing so just tended to stop doing this which resulted in her missing out on a lot of conversations .Sasha also had balance issues when she was younger due to her Microtia and fell over a lot but as she got older she learnt not to do that .Around the age of 12-13 she was advised to go and see an ear specialist who told her about her Microtia and the treatment options which were available to her .Sasha wanted to go for surgery but at this point in time she didn’t feel ready .Sasha was upset and also surprised to find how rare her ear condition really was and felt scared about the treatment .Sasha first went to see surgeon Mr David Gault in London at age 15 where he explained all of Sasha’s options to her .Sasha was not impressed about the option of a prosthetic ear ,Sasha’s second option was rib graft which at the age of 23 she decided to go ahead with .Sasha felt scared and worried as this was the biggest decision that she had ever had to make ,Sasha had always wanted ear surgery while growing up but wanted to try to accept her ear how it was and learn to live with it ,when Sasha was younger she didn’t feel ready to put her body or mind through surgery and hence why she decided to wait until she was older to go through surgery.Sasha felt awful when she first woke up from the operation and had a thick bandage around her head and then the pain started to kick in for her which obviously isn’t ever a nice feeling .Sasha knew it wasn’t going to be easy “no pain ,no gain” was something she reminded herself of.Sasha found that the side of her head, and chest really hurt and she found it difficult to laugh,cough or walk .Sasha didn’t like the fact that the side of her head had to be shaved in the process of the operation , Sasha found the whole process to be really traumatic although says looking back it was the best thing she has ever done and was nervous about appearing on the TV show dumped as she knew she would have to have her hair tied back and everyone would see her ear but she felt ready for that and feels it has helped her to turn her life around significantly .Sasha says you should do whatever feels right for you personally and not to be scared and feels her surgeon has transformed her life
goshgurl95 