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Galactosaemia and POF 

I was born with a rare genetic metabolic disorder called galactosaemia. I didn’t really ever know that much about it growing up, only that I had to stick to a strict milk free diet for life, and people said it sounds like ‘intergalactic’, which made me feel unique. Especially when I didn’t know anyone else who had it. Galactose is a  sugar found in milk. It gets broken down by an enzyme and released by the body. People with galactosaemia do not have this enzyme so the poisonous galactose stays in the body, causing damage to vital organs. Babies born with galactosaemia might suffer from liver disease, cataracts and brain damage. For this reason it is essential that milk is completely removed from the diet immediately after diagnosis. 

Galactosaemia can cause long term complications even if it the diagnosis is made quickly, due to damage caused in the womb. People with galactosaemia might have speech and language and/or learning difficulties. Low self esteem and lack of confidence is also common in galactosaemics. I know I could have done better academically, but a lot of this was down to me enjoying my social life and not working hard enough. I have always struggled with Maths and Science, which is known to be a symptom, but I excelled at spelling and reading, and discovered I had a flair for languages, resulting in gaining an A in GCSE French. I managed to get a degree in English, and a qualification in teaching English as a foreign language. I know that I have been very lucky, and I don’t believe I have been too affected by galactosaemia. I am proud of myself for what I have achieved, after learning more about my condition. 

It is easier to manage these days too. There are so many more people who suffer with food allergies and intolerances these days. Restaurants are catering for people like me much more, and supermarkets continually introduce new products to their dairy, wheat and gluten ‘Free From’ ranges. With the number of people choosing to become vegan, there has been a rise in dairy free menus in restaurants. I didn’t have the choice of so much when I was young, so I often felt like I was missing out. Especially when delicious looking birthday cakes would come out at childrens’ parties, and I would have to sit miserably and watch them eat it. My mother made me treats using dairy free substitutes, and spent many hours in the kitchen trying and testing recipes making alternatives so I felt like I was getting the same as everyone else. She is an incredible person. 

So, like I said, I never knew much about galactosaemia. Until now. My husband and I have been trying to get pregnant for two and a half years. We were recently told that we would need IVF to be able to have a baby, and the chances of using my eggs is so low that we should only consider using an egg donor. It’s been something we are both struggling with, as we obviously want children who are half of both of us. Hubby has come to terms with it a bit more now, as long as we can use his sperm. Galactosaemia is the reason for my infertility. It affects the oestrogen hormone in females who have the condition. This is information I was never told about when I was younger, so hearing about it at 35 has obviously come as a massive shock. From initially seeking help with having a baby, to being diagnosed with premature ovarian failure due to galactosaemia, which in turn causes early menopause, we have inevitably found it difficult and we have tried really hard not to let this situation put strain on our relationship. 

I was adopted because of galactosaemia, and now I can’t have my own children because of it. Even though I was raised by wonderful parents, I always had a hard time knowing I wasn’t genetically related to them, and now I won’t be genetically related to my own children. I have read that my DNA will be transferred to the baby via the placenta, as long as I am able to carry the baby, but even knowing this, I still feel alone at times. I know adoption is different and as soon as that baby is in my arms they will be mine regardless, but it’s still something I struggle with. 

We are currently on a two year waiting list for an egg donor. We are eligible for one free round of IVF, so we are hoping that it works first time. 

So for now we wait. Hopefully it won’t be as  long as two years. If we can find someone who would be willing to donate their eggs to Bristol Centre for Reproductive Medicine, we would go to the top of the list. This wasn’t the way I planned things, but it’s reality, so I just have to find a way to accept it. 

The BCRM need women between the ages of 18-35 with a BMI of under 30 to donate their eggs to replace the ones they are using or have already used. 

If you or someone you know are interested in donating please contact the BCRM on 0117 414 6888 and quote the reference number 32405. 

For more information about egg donation at BCRM click on the link:https://www.nbt.nhs.uk/bristol-centre-reproductive-medicine/treatments-services/donor-services/using-donor-eggs

To learn more about galactosaemia visit http://www.galactosaemia.org