We all enjoy a drink whether a glass of wine with dinner or a social occasion. If you have MCAD be careful.
Alcohol has many effects on the human body. You can have your highs and you can have your lows. The most important thing about alcohol and MCAD is the effect that is has on your blood glucose.
Alcohol typically lowers your blood glucose level. This is why bar snacks and kebab vans profit from our intoxication. People with MCAD can not afford to let their blood glucose dip and therefore you have two options with regards to alcohol. You can avoid it or you can be sensible. The same as everyone else really.
I was told before starting University that I should never consume alcohol. This lasted less then 24 hours after I enrolled. You can not tell an 18 yr old what to do.
I have has some fantastic nights out with friends and some that I would rather forget all as a result of alcohol and how I managed it. On those nights which were fun, I always ate a carbohydrate filled dinner first, mixed drinks with high sugar drinks, took snacks with me and ate before going to bed. No problem.
The times in which I wish I could forget. I did not eat and as a result am a failure of my own principles.
I would never tell someone with MCAD they could not enjoy a drink but I would advise knowing your own body and limitations before you do. After 10 years of legally be able to drink, I have learnt these boundaries but still trip up on occasion and rather then paying the price of a hang over the next day, I pay the price of a hang over the next week. I know my body is unable to cope with the effects of alcohol like most others and that I will be and always be a 'light weight'. Not such a bad thing as it is a cheaper night out but if you push it the consequences are higher.
Years ago, on holiday, 'someone' decided to spike my drink with extra alcohol (not the first time either). I knew that being away from home I had to be mindful of myself. Obviously I had not planned for this. I was quickly rushed by ambulance to hospital and treated by people who not only did not recognise MCAD but spoke almost no English. I had declared that I had MCAD and provided full details when booking my holiday and paying for health insurance however after the incident the insurance company declared that I was not covered. This was not my fault and said party responsible had to pay up for the, not so funny joke.
I now can not get health insurance when traveling abroad. All the result of one stupid action manifested by alcohol.
MCAD'ers' be cautious. You may be able to look after yourself but we live in a world or irresponsible and stupid people who do not know the consequence of their actions.
Wednesday 3 July 2013
Monday 1 July 2013
MCAD and Pregnancy
Its four months until I turn 28. I am getting married in 2 years and saving for a deposit on my first house. So naturally my Fiancée and I have discussed our future and the possibility of having our own family.
We adopted a little Jack Russell 7 weeks ago called Flo, so that will do for the moment with regards to a family!
The prospect of having my own family and being pregnant is something I have thought about since I was about 13 years old when I first went to the Genetic Metabolic clinic and was told 'you can be our Guinea Pig when you have your first baby'. WHAT?!?! I had only just traded my Barbie dolls for a 'Backstreet Boys' poster! I was not old enough let alone mature enough to even consider that far into my future. I still could not spell MCAD (Medium-chain acyl-CoA dehydrogenase deficiency - I can now!).
I have always been fascinated by science and have always had a thirst for knowledge, this has probably only been increased to further understand my own genetics. I have always understand that two carrier parents have a 1 in 4 chance of having a child that would inherit the full condition (me) and 1 in 2 chance of having a child which, like them, would be a carrier (my younger sister).
So that's the basic principal.
My younger sister is a carrier of MCAD and when she was pregnant with her beautiful son, I explained the above principal to her. She consulted her Doctors, who then put her on to mine. With my blessing (and written permission) they were able to access all my medical files and have a number of tests to check the likely-hood of her son also inheriting the condition. All was fine and everyone is 100% healthy.
A little trickier for me perhaps. My Fiancée can also get tested to see if he is a carrier, which is great but it does not prevent anything from happening to me. Everyone else is interested in the inheritance part, my parents (who never gave up when others had told them too) and I are more concerned about my health. Will I be physically strong enough to cope with pregnancy and the stress of child birth? Would I have to have a caesarean? Am I wasting my time worrying because the probability of having children naturally is out of the question? I certainly do not know any of the answers.
Studies have shown there is a correlation between the age of the mother and problems during in pregnancy/labour and the higher increase of children born with physical/ mental disabilities. Does that mean by the time I am married and have my own house, probably 30, I will be too old and that I will further increase the chances of problems? If anyone has the answers please tell me!!!!
I would certainly need a very supportive and committed team of people around me and a lot longer recovery time. Is it worth jeopardising my own health and having to rely on other people to take time out of their lives to help? Or is it daft to even worry about these things when there are thousands of children in the world who need a family?
I could spend months philosophising on all of this but some information would be better. I have searched for 'MCAD and Pregnancy' on Internet search engines. The first link was about women undiagnosed with MCAD who have died during in pregnancy due to liver failure. Brilliant. Not what I was hoping to read. Apart from that, I found a lot of information pages for parents of children being tested or diagnosed with MCAD. What about me, what about the rest of us, if there are any more of us, I don't know if or where they are I have never been told nor found anyone. The rest of us want to know what comes next. What happens after infancy? Or Mr & Mrs Expert do you not know? Or if you do know please share it with the rest of us. I do not want to spend my life on countless trips back and forth to the hospital just to get answers or be told 'we will look into it and run some tests' only to be forgotten about.
MCAD and Pregnancy.......to be continued......when I know!
We adopted a little Jack Russell 7 weeks ago called Flo, so that will do for the moment with regards to a family!
 |
| Flo |
The prospect of having my own family and being pregnant is something I have thought about since I was about 13 years old when I first went to the Genetic Metabolic clinic and was told 'you can be our Guinea Pig when you have your first baby'. WHAT?!?! I had only just traded my Barbie dolls for a 'Backstreet Boys' poster! I was not old enough let alone mature enough to even consider that far into my future. I still could not spell MCAD (Medium-chain acyl-CoA dehydrogenase deficiency - I can now!).
I have always been fascinated by science and have always had a thirst for knowledge, this has probably only been increased to further understand my own genetics. I have always understand that two carrier parents have a 1 in 4 chance of having a child that would inherit the full condition (me) and 1 in 2 chance of having a child which, like them, would be a carrier (my younger sister).
So that's the basic principal.
My younger sister is a carrier of MCAD and when she was pregnant with her beautiful son, I explained the above principal to her. She consulted her Doctors, who then put her on to mine. With my blessing (and written permission) they were able to access all my medical files and have a number of tests to check the likely-hood of her son also inheriting the condition. All was fine and everyone is 100% healthy.
A little trickier for me perhaps. My Fiancée can also get tested to see if he is a carrier, which is great but it does not prevent anything from happening to me. Everyone else is interested in the inheritance part, my parents (who never gave up when others had told them too) and I are more concerned about my health. Will I be physically strong enough to cope with pregnancy and the stress of child birth? Would I have to have a caesarean? Am I wasting my time worrying because the probability of having children naturally is out of the question? I certainly do not know any of the answers.
Studies have shown there is a correlation between the age of the mother and problems during in pregnancy/labour and the higher increase of children born with physical/ mental disabilities. Does that mean by the time I am married and have my own house, probably 30, I will be too old and that I will further increase the chances of problems? If anyone has the answers please tell me!!!!
I would certainly need a very supportive and committed team of people around me and a lot longer recovery time. Is it worth jeopardising my own health and having to rely on other people to take time out of their lives to help? Or is it daft to even worry about these things when there are thousands of children in the world who need a family?
I could spend months philosophising on all of this but some information would be better. I have searched for 'MCAD and Pregnancy' on Internet search engines. The first link was about women undiagnosed with MCAD who have died during in pregnancy due to liver failure. Brilliant. Not what I was hoping to read. Apart from that, I found a lot of information pages for parents of children being tested or diagnosed with MCAD. What about me, what about the rest of us, if there are any more of us, I don't know if or where they are I have never been told nor found anyone. The rest of us want to know what comes next. What happens after infancy? Or Mr & Mrs Expert do you not know? Or if you do know please share it with the rest of us. I do not want to spend my life on countless trips back and forth to the hospital just to get answers or be told 'we will look into it and run some tests' only to be forgotten about.
MCAD and Pregnancy.......to be continued......when I know!
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