My name is Huma Saeed, I am 21 years old, I am in my final year of completing BA (Hons) Education Studies and I have Ushers Syndrome Type 2. It's a very rare condition, but for those of you who do not know what Ushers is, the condition involves both the eyes and ears, I will discuss these in more detail below.
As you can tell from the title, the whole idea of this course is to simply share our experiences of our condition and the difficulties/challenges you had faced. I believe that it is so important to share our experiences or to ask questions for those of you that do not have the condition, I will be more than happy to answer them. The reason I created this platform is to allow all users to learn from each other based on our own experiences, share our own story and that's what makes it unique. I hope to help those who are wanting to know more about the condition and to avoid confusion as I did when I was first diagnosed with Ushers.
I will start off with my journey first, I have worn hearing aids ever since I can remember, but it did not cause any major problems for me personally, as I was so used to having the hearing aids in my ears where it came to the point where sometimes you don't realise you have anything in your ears. However, in 2008, that's when I was completely and utterly distraught, and above all else, I was left feeling incredibly confused.
It was a casual day, I went for my regular check-ups at Specsavers and the optometrist raised how there were some black spots at the back of my eyes and suggested I have it seen by an eye specialist. Having been to many appointments in Manchester and Blackburn, the doctors finally came to the conclusion that I had Retinitis Pigmentosa (Ushers). The feelings and thoughts I had were indescribable, I was an emotional wreck because I did not understand what it was or how it will affect me in the future. Although the doctors did explain the condition, they did not really emphasise or explain the difficulties I would potentially face, only mentioned that my eyesight would eventually deteriorate. I only started realising the effects when I could not see anything at all at night, where I once ran into a lamp post, and I remember thinking where on earth did that come from! I was falling over my sister toys who was a toddler at the time. It was through my own experience did I realise what my condition was doing and how it affected my normal day-to-day routine. It was during this time, my mum decided that I should go and get my eyes checked because falling over the toys soon became very repetitative. It was then, the optometrist raised how I had black spots at the back of my eyes.
Once we all realised what the condition was, it does not only affect the person who has the condition, it affects your whole family, they go through the journey with you, share your sorrows with you, shares the difficulties with you and most importantly, share their love and support with you throughout the difficult journey, as my parents did.
Moving away from the depressing 'stuff', who cares if you have disabilities, you need to stay optimistic in life! Having disabilities is not a burden, in fact, its the total opposite, see it much more of a blessing above all else. I've got to admit in high school, I did not work as hard as I could have done, didn't really come out with the best of grades. Why? Because I honestly did not see the point of working hard, I thought well what's the point, nobody else believes in me, I must be dumb because of my disabilities. Its a little bit like the self-fulfilling prophecy. However, it was during college when I realised I want to better myself and prove all those wrong who doubted my capabilities from the start. In the end, I came out with three A's and I hope to go into teaching this year in September 2018 to do my PGCE. To be honest, I would not have reached this far if it wasn't for my parents, they were the only ones that believed I could make something out of my life and be successful.
This goes out to all of you out there reading this, my disabilities motivated me to become a teacher where it is my dream to ensure that my students do not go through what I had experienced. Ever. You can do the same, reach out for your dreams, you can do it! Do not ever listen to what other people have to say about you. Be proud of what you have and be an inspiration to others. Great things will come your way, stay positive, stay happy and strive for the best.
Please share your experiences as I did, it's so important for people to know about this condition because it's not something people would openly talk about, everyone has a story with different experiences to mine. For those of you that have families, children or friends that have a similar condition to me, please feel free to ask questions, we're all here to help as one big community. Help me build and expand this platform by putting it into a great use of helping each other.
Thank you for your time, Huma x
- Teacher: Huma Saeed