Never doubt what a difference you are making

"Thank you. Very simple words but expressed with such heartfelt meaning.

I have not really given much thought to the act of blood donation but I must say that over the past few years I have found myself giving it much more consideration. The benefits of blood donations and the products and treatments that are made possible by it are much more real to us. Both my sister and more recently my youngest daughter have benefitted from them. We have seen the benefit that blood donations provide. It's a simple act – but such a gift.

I find myself in a situation where I would love to give blood but am not eligible and my husband is in the same situation. So given I can't give blood, I give my thanks to those that can and do, I share our story in hope that it might help a few people consider giving a donation.

My youngest daughter Ashley was 12 (and a half) when her vision suddenly started going 'funny'. At first she was seeing double just occasionally and then within two weeks it had progressed to most of the time. This is when eye patches became the greatest fashion accessory. Over the next three months of doctor appointments, tests and scans we finally got a confirmed diagnosis. By this time her vision was double all the time and her eyelids were very weak. She was starting to have trouble moving the muscles around her mouth and occasional issues swallowing. Turns out she had the classic presentation for Myasthenia Gravis – a chronic auto-immune neuromuscular disorder that results in rapid muscle weakness due to immune system been overactive and attaching the muscle receptors in the body. It occurs in about 14 of 100,000 people with around 10% of these occurring in children. June is Myasthenia gravis awareness month so if you want to know more come talk to me.

One of the four core treatments for Myasthenia Gravis is Immunoglobulin IVIG – it is given to help manage symptoms and for people who suffer MG is often referred to as the Go-Go juice that gives some pep in your step. This is a product derived from blood – extracted from blood plasma from a large number of donors. The other treatments include Cholinesterase inhibitors (helps flood the signals between nerves and muscles so more get through); Immunosuppressants (we are currently weaning off these) and Thymectomy (she had surgery in September last year to remove her thymus gland).

So the role of Immunoglobulin IVIG has been an important tool in the management of this condition. The product is called Intragam P and is used for the treatment of many conditions relating to both suppressed and overactive immune systems. It takes lots of donations to make the product has it is derived from large pool of blood plasma donations and as a result is quite expensive. Ashley's story is not that unique – just one example of the thousands of people who are helped by blood donations and the variety of blood derived products.

So when I think of Ashley's treatment using the products derived from your donations I could think of:

The time it has taken to have the treatment administrated - 271 hours of intravenous infusions

The volume of the product that has been used 11,000 ml; 55 200ml bottles.
I could tally up the cost of that product – an approximate value of $59,000
I could estimate the number of donations it would take to create the product
446 blood donations (most to the staff at Environment Canterbury)
167 plasma donations

The reality is I assess it very differently. I see her symptom free. That her body was strong enough through surgery so she did not go into a crisis state. That she has a smile on her face and is no longer wearing an eyepatch to manage the double vision and to help keep her weak eyelid open.

For a family that has received the benefits of your blood donation and experienced the frustration and guilt of not been able to help our daughter and other like her, I thank you.

Never doubt what a difference you are making."

Judith, Ashley's mum