Thursday, July 12, 2012

Living with Coats disease

I have been fairly inactive on the blogsphere as those who are following this blog would have noticed. A lot of things have been happening since June - well, since the start of the year really, which have made my fairly steady and peaceful life rather topsy turvy. I can list out the things that happened since the start of the year

Jan: I get into a strange combination of depression and mid life crisis Feb-April: Sophia has to go through five cavity fills at the dentist March: I am slowly coming out of my depression April: Major reorganization at office, My role gets changed rather drastically to something I am not trained for and need to quickly adapt to. June: Husband has a problem with his Australian visa and we lose three days of sleep over it before things smooth out June: Anjali has a fever in Australia June: Sophia breaks her hand and gets a hairline fracture while playing on the bed.

Its July and yet another challenge has made our lives topsy turvy. Anjali has been diagnosed with Coats disease. This is a rare, non heriditary congenital disease which causes reduced oxygen supply to her retina due to abnormal blood vessels. Since the retina is not receiving enough blood, it grows more blood vessels which are leaky, the blood leaks out into the gel in the eye, further aggravating the oxygen problem. The positive feedback causes further growth of abnormal blood vessels. The leakages accumulated in the retina, obstructing vision

Anjali was diagnosed with 6/60 vision in her left eye at a school screening. We were rather disbelieving and took her to the optometrist. The optometrist thought it may be a lazy eye, but the retinal images came out when we were still taking about lazy eye treatment.

We were bounced from appointment to appointment for the next three days. While it was clear that there was a problem with her retina, there was no real diagnosis until Monday evening. We saw two doctors on Monday and got really scared at the end of the day.

On Tuesday, things began to move. We met with Dr Ranjana Mathur at the National Eye center. She gave us the clear diagnosis of Coat's disease and gave us an understanding of the progress and severity of the disease. We tried to do an angiograph to determine the progress of the disease, but as it required Anjali to have an injection and dye in her vein while she was still awake, she didnt cooperate and the doctors simply souldnt get the needle inside her.

The doctor decided to proceed with the treatment anyway, since the only treatment was multiple surgeries with a combination of laser treatment, Criotherapy, which means freezing, and a very fancy sounding injection called Lucentin that reduces the swelling. The first surgery was performed on Tuesday.

Anjali was given a day bed at the ward and I was allowed to go with her into the operation theatre until she was anasthezised and the sleeping gas made her go under. Husband waited outside the sterile area and I waited inside until they wheeled her out, with a patch over her eye. She was awake but still very drowsy.

The follow up showed that the surgery went as scheduled but it is still too early to see if the leakages stop. That, according to the doctors is a process that would take months. And even after the treatments stop, the improvement of vision is completely because of the natural healing capability of the eye and depends on the child.

We are considering Ayurveda to facilitate the process once the treatment is complete and possibly some exercises in the meantime, since they helped so much with my conjunctivitis.

Ofcourse, more important is to get her confidence back and that means putting her into her regular lifestyle as soon as possible. Yesterday, she helped me to make gnocchi for lunch and shape the semolina into the patties for baking.

I keep getting updates from The crafty crow, the artful parent and other similar blogs on activities to do with the children.

Yesterday we did an activity with contact paper stickers which was at the artful parent and it gave her enough to work and concentrate before bedtime. This morning, she continued work on the stickers and proceeded to other activities.

Events like this do put things in perspective.


  1. Hi there,

    We found your blog and were touched by your story. We would like to invite you to explore our non profit foundation, the Jack McGovern Coats Disease Foundation. We offer resources and support for families just like you.

    Our website is here:

  2. My son has Coats' Disease as well. I've kept a blog about it if you'd like to read.

  3. I, too, was diagnosed with Coats over 30 years ago. The are many of us that connect via FaceBook Groups (Raising Awareness of Coats and Children and Families with Coats and How to Recognize Coats) well as via the Jack McGovern Coats Disease Foundation. There are many mom's that can relate so please feel free to join and share your journey. Good luck.

  4. My son has coats disease as well. I havent updated it in a while...but you can read it here: we also have a caring bridge set up. Go to and his site name is samuelhoward. That ones kept up to date! Thanks for sharing your story and good luck to your daughter :)you. Xoxo jennie


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