How to Write a Thank You Letter to Your Donor’s Family


Great post

Originally posted on Living With Keratoconus:

If you’ve had a corneal transplant, you understand that your sight came with a hefty price. For me, it wasn’t until the day after my transplant that it became very real to me just how precious the gift I had just received really was. My doctor shared some details about my tissue donor and gave me the address and phone number to a tissue bank, if I wished to write a thank you note to the family.

It’s one of those things you really don’t know where to begin, you want to say so much and you want to do so much to show how grateful you really are, yet you are limited in what you can do (at least in the US.) I sat with a notebook and a pen for days and still couldn’t come up with the right words.

What if they don’t want to hear from me?

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Keratoconus – My 16 month post graft journey in pictures- Wendy UK

I wanted to put together some pictures of my graft progress over the past 16 month period. I know many of the KCGB members will have seen lots of these photos many times over but I thought what with the group growing so fast & so many new members it might be a nice thing to share.

Sharing our different keratoconus experiences is really important so that fellow kc’ers know that they are not alone!

The pictures start from day one photo being terribly bloodshot as you’d expect moving on to around 3 months when I had my first three sutures removed as they became very loose.

I have also included things like the very large box of eye drops and other eye related things you seem to collect with having a graft & also my eye tattoo which I had done to remember my donor with thanks.

I hope you like the pictures & if you have any questions please feel free to make comments, or join me in the Keratoconus Facebook Group:

Sign up for organ donation and give the #giftofsight



my eye day 1 post graft

my eye day 1 post graft



WP_001959 NHS donor card

Right eye top comparison

Right eye topo comparison

eye tattoo

My eye tattoo


Long lashes caused by the eye drops


15 months post graft no stitches Graft with stitches- looking clear


3 months post graft 3 stitches out graft with stitches

14 months post-graft

14 months post graft

no stitches 15 months post graft

no stitches 15 months post graft


Keratoconus- my story by Leonie

Hello everyone,

My name is Leonie, I’m a 23 year old Dutch lady and I have Keratoconus. They found out I have this eye disease when I was about 12. I had been wearing sclerals for almost 3 years, when I was 15 I had to get my first corneal transplant or graft.

When I was 16 I got my second transplant, but things got a little difficult there because on the day I was supposed to get my transplant they found out I have iritis/uveitis. I probably got it in 1998, but back then they never knew what it was.

I had to take a lot of medicine to make sure it wouldn’t flare up in the next few days, before I could even get my transplant. I got my transplant 2 days after the date I was supposed to get it.

I also suffer from depression ever since they found out I have KC, and living with both KC and depression is kind of hard at times. So, I really want to share my story with all of you, because it was and still is (sometimes) an emotional rollercoaster for me.

The gift of sight

When I got a phone call from the hospital telling me they found me a donor, I was happy and sad at the same time. I knew I could finally see properly again because of this beautiful person, donating his/her cornea to me, but I also knew a family somewhere in the same country as me was going through hell because they lost a loved one. Mixed feelings. I was only 15, my donor had to be younger than 25 so maybe he or she was still a kid too… Not a comforting idea at all.

I’m still very thankful for this person being brave enough to donate his or her cornea to me. The family wanted to stay anonymous so I could never thank them.

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So I’ll just say it again:

Thank you so much for giving me this opportunity! You really changed my life.

The days went by very fast and I was super nervous and excited; within a year I could finally see better again! But on the other hand I was kind of scared too because I didn’t really know what to expect. I prepared myself for what was coming but I didn’t really know where to prepare for. Yeah of course they told me everything over and over again and what I could expect and how things would go in the next few months, but theoretical things are always different than when it actually happens. I didn’t know anyone else with KC and I never told my family how I felt about all of this, how nervous and scared I was, I just dealt with it myself.

It had a huge impact on my life and I only made it harder for myself by not talking about it, I didn’t do it on purpose but I just didn’t know how to express myself so I just didn’t.

The next few years after my surgery were hard for me as well, because I still would never talk about it, when people asked me about my eyes and how I felt I would always tell them I was doing fine, talk about it as if it was a very common problem and not a big deal at all. But getting a transplant kind of is a big deal, isn’t it?

When I woke up from surgery my eye felt really sore and uncomfortable, but other than that and a massive headache, I felt pretty good. This was a beginning of a new chapter in my life.

I must admit that I forgot how a lot of things went after my surgery, because time was going by super fast. It was 7 years ago, I was young and this is the first time I’m talking about my life with KC like I’m doing right now.

Regaining my sight

I can remember how it was to see my sight change though, that’s something I will never forget. It was amazing! As time passed, I could see everything more clear again, I noticed how many different colours and shapes there were,

I could see depth again. Everything was so beautiful. Everything was so noticeable. It was such a relief to see like this again after all these years.

A lot of eyedrops, creams and other medicine have been used in the first few years, it was a pain in the ass at times but it paid off in the end; healthy and clear transplants!


Now 7 years after my surgery I’m still very thankful I got a second chance with my eye sight. Not everyone gets a second chance. I still have difficulties going on with my eyes, and expressing myself, and enjoying things.

But I’m still super happy I got my transplants. I still need to wear scleral contact lenses. And no, I still don’t have a perfect sight, and everything can be super frustrating, but at least I can see more now than I could when I was 12.


@marielleonie find me on Twitter with the #kcfamily

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“Artificial iris implant surgery is not a very difficult procedure and is becoming more popular”

Originally posted on Aniridia Network UK:

“Cataract surgery in eyes with iris defects can be challenging, but careful preparation as well as recent advances in surgical instruments and iris implants mean outcomes are significantly improving for these patients.”

This was the subject of a presentation given at the 2013 annual congress of the United Kingdom and Ireland Society of Cataract & Refractive Surgeons. The speaker was, Sathish Srinivasan FRCSEd, FRCOphth from University Hospital Ayr, in Scotland. He gave a comprehensive overview on how to approach cataract surgery in patients with iris defects, with detailed surgical video demonstrations of his work on these patients.

Read a full article about the session

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Birthday Gift

Originally posted on Living With Keratoconus:

I was sitting in the small waiting room, patiently waiting for my turn to fill out the paperwork for health insurance. If I am to have another corneal transplant, I need to first get better health and vision coverage. I looked at my phone I had a missed call and a voicemail, but no phone number. I went in, did the paperwork and walked back to my car.  The idea of waiting 30 days to find out if I qualify for coverage didn’t settle very well with me and I began to worry. Sitting in the parking lot, I listened to the voicemail and it was my eye doctor. The lab had sent another pair of lenses to try on. I didn’t know she was working on another pair, last time I saw her and the lab representative, it sounded like we had reached the bottom of the pit. I called…

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What Causes Night Vision Blindness?

Originally posted on New Vision Eye Center Dubai:

There are quite number of factors to consider when diagnosing the cause of night vision. Many people, have trouble seeing in the night, where in most cases it is just blurry vision accompanied by Halos during the night. In some cases, you are able to see large objects, recognize faces instantly, but will struggle to watch television or work on the computer, and with other patients who experience night vision trouble, they are not able to see anything at all. The New Vision Eye Center in Dubai is specialized in diagnostics for night vision problems and are able to help you overcome the problem or manage it.

If you are experiencing trouble seeing clearly in the night, there are different health and eye tests that would need to be checked to correctly determine the cause of the symptom.

Millions of people around the world experience night vision trouble due to…

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Keratoconus SKY DIVE! Raising funds for

Great news folks- KCGB member Amy Musto is doing a skydive to raise funds for the only UK Keratoconus charity


Amy Musto- skydiving for Keratoconus Group UK

In February 2013 Amy was diagnosed with Keratoconus after noticing a significant change in her eyesight over a short period of time. Luckily the condition had been caught before it became too aggressive and Amy was offered cxl Collagen Cross Linking treatment (custom-made riboflavin drops saturate the cornea, which is then activated by ultraviolet light) which she had done in March 2013. Collagen Cross Linking is not a cure for Keratoconus but the aim of this treatment is to stop the progression of the condition.

Having fully recovered, Amy is now hoping to do a Tandem Sky Dive at the Headcorn Sky Diving Centre (located in Kent) on Saturday 7th June, weather dependent.  She has set up a  Just Giving account to raise the funds but will also be collecting sponsors in cash from close friends and family.
Amy’s parents will be advertising her Charity Sky Dive where they work and it will also be promoted at Boots Opticians where she lives.

Skydive at Headcorn

The company Amy works for (Barbican Insurance) sponsor 3 small charities which includes the Keratoconus Group UK.  They will be funding a total of £5,000 however they are going to do several events and try to raise even more money.
Barbican Insurance have also promoted the Sky Dive through their own Just Giving page here
Just Giving pages:
Here is the website for the Sky Diving Centre:

Please donate and support Amy in her quest to raise money for Keratoconus Group UK, our only charity in the UK. please share our posts about this on Facebook and Twitter and help raise awareness!

Follow Amy and KeratoconusGB and Keratoconus Group UK on Twitter:




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