Mitochondrial disorders in the Media

[freyakitten]

Times Magazine this week. Sensationalised, as one would expect, but apart from the human interest story (which discusses a child who I don't class as an extreme case, because he has lived long enough to start kindergarten) it's fairly factual for the media.

http://www.time.com/time/magazine/article/0,9171,1555122-1,00.html

Comments

[greenglowgrrl.livejournal.com]

Hello. Thought I'd friend you. Better than a barrage of questions about how you cope. :)

[freyaw.livejournal.com]

I have comparatively mild symptoms, so I cope more easily than many :D I am, for instance, holding down what's technically a full-time job as I can do four days a week, as long as I don't overdo on weekends, or have a week without late nights (less than 8 hours sleep counts as a late night).

Since this week has not and will not include early nights, I'm expecting to have difficulty doing anything this weekend.

The main problems I have are:
- hypoglycaemia (barely controlled) and the diet that goes with it
- my body appears to think meat protein is poisonous in amounts considered normal by Western society. On average I eat 50-100g per day. More than that triggers badness.
- exercise intolerance. Not horrible, yet, but I can't, for instance, cope with the lactic acid production associated with continuous muscle movement during menstruation and the lactic acid produced during normal exercise at the same time. I also found that menstruation didn't hurt as much when the amount of lactic acid in my blood was lower. The Pill is wonderful, I can put off the whole thing until I don't have to do anything active for a week. And these days I don't go through an entire packet of painkillers in the first two days.
- chemicals are bad. Air 'fresheners'? Poisonous, and ubiquitous. Many commercial artificial flavourings, colourings, preservatives, ditto. It's amazing how hard it is to find make-up that I can cope with. There are something like two or three commercially available brands free of artificial fragrance, and I can't use their brown colourings.
- the social aspects of the whole thing. I don't look sick. As long as I take care, I don't have visible problems. Therefore I ought to be able to cope with no special treatment at a barbecue (meat only, no veges, limited salads (I can generally eat, by myself, around a quarter of what is normally supplied for 20-30 people), white bread - I've learnt to take my own supplies of food that I can eat, with snacks so that I don't get low blood sugar, and cope with the assumption that I'm being rude to the hosts). My sister insists that I'm a malingerer. I don't speak to her much.
- I'm skinny. I eat a lot (generally healthy stuff, because everything else is Bad). The reaction from people who see me eat for the first time is usually one of two - either "Gee I wish I was that thin, why are you complaining about having lost 6kg in a week (11% of my weight)? I'd love to lose that much that easily!" or the series of questions designed to discover if I have an eating disorder. The assumption that, because I am thin, I won't want second helpings, or indeed a full serving the first time, cheeses me right off.

[shadow-5tails.livejournal.com]

Interesting to know some progress is/might have been made in recent months. Thanks for sharing!

And you know, a lot of your list above sounds rather too familiar. Ugh for both our sakes...