Living with a rare eye disease

Salaam/hello everyone, my name is Alisha Khan also known as Nailsbyalishaxo on social media. I'm a self-employed nail technician/nail educator and brand owner from Birmingham UK.

MY PIC STORY

Unfortunately, in March 2019, I was diagnosed with a rare eye disease called Punctate Inner Choroidopathy, short for PIC and over the years, it has gotten worse.

In March 2019, I noticed my vision was distorted in my right eye, straight lines became wobbly, and there was a grey patch everywhere I looked. But when I looked in the mirror, there wasn't anything in my eye. This worried me, so I rushed to the emergency eye hospital. That's when they diagnosed me with PIC.

During the first year of having PIC, I wasn't too concerned as the doctors told me the PIC was stable, there wasn't much activity going on, and there wasn't anything to be worried about. I didn't know what PIC was then, and I didn't realise how bad it could get. I just knew I had to go hospital every few days for the first 2 weeks, then once every 2 weeks, then once every 4 weeks for almost a year to ensure it remained stable. After that, the doctors always told me if I noticed a change in my sight, I would need to come back in asap.

A year later, in February 2020, I noticed another grey patch. I rushed to the eye hospital, and that's when the doctor told me I would need to get an emergency injection in my eye called Ozurdex. This was performed 2 days after the appointment. Ozurdex is an anti-inflammatory drug. It is a type of steroid, and the medication is contained within a long-lasting implant and slowly releases the drug over many months.

Once I got this injection, I was terrified as I'd never had an injection in my eye before, never mind them injecting an implant in my eye. Then covid happened. Now because of covid, I want to be able to get regular checkups; I was terrified because I've just had a random injection, I don't know much about it, and then covid happened. That whole year was so terrifying that it mentally got me in a terrible place.

After many months of lockdown, sometime at the end of the year, I attended the hospital again and was able to get my scans and test done to see if the injection had helped. Thankfully it was stable, and I was over the moon.

For many months I was okay. I tried to build up my business again and get back into work mode. But in August 2021, I relapsed. I attended a check-up appointment after so long due to covid, and it wasn't till the next day I noticed my vision had gotten worse. I was so concerned and shocked.

I didn't know what was happening, so I got another emergency appointment and was told I had to start taking Prednisolone steroid tablets. So first, 40mg of steroids were taken for 1 week, then slowly reduced by 5mg each week after. I was then given a eye drop to help the pressure in my eye, and that needed to be taken 3 times a day.

For the first time since having PIC, I was more scared than ever because I was told my retina could get detached and I could end up losing my vision permanently, and it could also go into my other eye.

I had to do some research and came across some fantastic doctors and nurses who specialise in PIC, and I was able to attend the QE hospital as they have a PIC clinic.

At one point, I had around 8 lesions in the back of my eye; blood vessels were leaking (that's what causes the grey patches, and there was a lot of inflammation) So the doctors told me I would have to get another type of injection in the eye and this would be done in a course of 3. After that, I will need to get it done every 4 weeks. This treatment is called Eylea. This helps to stop the blood vessels from leaking at the back of my eye.

After the 3 courses of the injection, I was told I must start another medication called Mycophenolate. This is an immunosuppressant drug.

Since beginning on all these different drugs and getting all these injections, it honestly broke me as a person. I remember I couldn't see out of my right eye for a long period of time. Images were missing. I couldn't read text, couldn't write, couldn't work, couldn't see clearly. I could even see the pavement. I had to always have family with me everywhere i went. Imagine never being able to see the faces of the people you love the most. Honestly I hit rock bottom, and at one point I didn't want to be here anymore. Imagine waking up one day with your vision perfectly fine, then the next you can't see. That feeling is so scary and heartbreaking. For months I hide away, and I didn't open up. But I'm hear opening up. The worse thing is about having PIC is that it can flare up randomly. They don't know why or how, which is the most frustrating part. My independence was taken away, and it can be taken away again at any time.

Recently in March 2022 I've had another flare up, and at this very moment, my vision isn't the best. I have a lesion that has decided to want to become active, and blood vessels are leaking yet again. The doctors and nurses have had to increase my Streiods and Mycophenolate and want to reinject my eye again with the Eylea and then possibly introduce a new medication which will involve me self injecting every 2 weeks in my thigh or tummy. So at this very moment in time I'm seeking extra medical help, continues treatment and new treat is soon to begin

ASKING FOR YOUR HELP

Being self-employed and living with a rare eye disease that can flare up at any moment without warning is so tough. I've had to cancel appointments with clients because of this rare eye disease, and it's so frustrating and unprofessional. Being self-employed means I don't get paid when I have time off work. I'm already in so much debt from covid, and because of this eye disease and the fact its actually preventing me from working because I physically can't see clearly, its making things 100x harder for me. The fact I am speaking up about this gets me so emotional because I'm the person who helps others. I'm never the one to ask for help. Since I've spoken about my rare eye disease on social media, many people have told me to create a go-fund-me because they think it will help me. I'm not sure, but I hope it does help. I can't help but feel bad as there are people worse off than me, and they deserve the help more. But everyone said with the rare disease I have and the fact it can randomly flare-up and prevent me from working, seeing, doing normal daily activities such as reading, cooking or even walking, I need to try and ask for help. So here I am asking for your help.

If you see this page and hear my story, and it touched your heart, I hope and pray you can help me, even if it's a small donation.

I honestly appreciate your time and effort for reading this post, and if you donated THANKYOU FROM THE BOTTOM OF MY HEART!

I pray that everyone who reads this post and donates, God/Allah blesses you all. I pray my vision improves In'sha'Allah. I pray you all succeed in life In'sha'Allah. I pray your worries and struggles ease and your health improves and remains fantastic In'sha'Allah. Ameen.

Health is such an important thing, and vision is so important. So please don't take things for granted. Look at the people you love and admire their beautiful smile, beautiful, aura and soul. Because you may wake up one day and not be able to see their beautiful smile again.

Anyways bring on the treatment and more medication. I hope to be back to work one day, and I will ensure to keep you all in my prayers.

Thankyou again

xxx