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| Photo of Tia |
We asked Tia who is one of our clients if we could share her post that she wrote about Usher Syndrome Awareness Day UK. This is her post (thank you for sharing Tia):
Sense org summarises Usher Syndrome as an inherited, genetic condition of which the main symptoms are hearing loss & sight loss due to a condition called retinitis pigmentosa (RP). Balance can also be affected.
There are 3 types;
Type 1: usually born with profound hearing loss in both ears. Balance is affected. Development of nightblindness occurs in the first 10 years of a child’s life, progresses to tunnel vision & further sight problems due to RP.
Type 2: usually born with a mild to severe hearing loss in both ears. Balance is not affected. Sight loss is gradual starting from teens/early twenties.
Type 3: gradual sight & hearing loss, which occurs later in life. Balance can be affected.
I have type 2, severe hearing loss in both ears & sight loss from RP starting in my early teens.
Without going into the boring medical terms, what RP means for me;
- night blindness
- peripheral vision loss
- gradual tunnel vision
- I constantly see blinking/swirling/shimmering lights & black shapes
- I struggle with bright lights & colours
- my eyes are slow to adjust from dark to light & vice versa (think going from outside into a shop)
- I get blurred vision
- a few other symptom that even I don't know how to break down the medical terms into simpler ones🙈
And that's the medical facts summary... what they don't detail is how much it impacts everyday life, every decision, every move, every thought, every situation, every relationship, every dream... just everything.
And these are all made harder from the lack of understanding and society views on disabilities. Though it has improved over time through dedicated organisations, Internet and social media helping people to share their stories, there is still more needed.
Any condition is so much more than it's medical terminology. I'm sure I can't be alone in feeling that greater awareness of medical conditions and their impacts would make life that little bit easier.
I've always wanted to do something positive with my skills and experience and so this is my way of contributing (however very small) to raise awareness and understanding for the condition.
