ed
Ectodermal Dysplasia Society
Welcome to the ED Society website
  Incontinentia Pigmenti
Membership
Click here to become a member >
Members Login
User name
Password

Forgotten Password?

News

Swine Flue and ED

Some of our members have been enquiring about swine flu and temperature control.  Whilst the ED Society cannot give advice per sa as each individual is different, it is important to closely monitor the temperature of an ED individual.  The advice on the NHS website states:

 

“So far, most swine flu cases have been mild, with symptoms similar to those of seasonal flu.  Only a small number of people have had more serious symptoms.

 

If you or a member of your family has any of the following symptoms and a temperature of 38°C or above, you may have swine flu.

 

The typical symptoms are:

·                     a sudden fever (a high body temperature of 38°C/100.4°F or above), and

·                     a sudden cough.

 

Other symptoms may include:

·                     headache,

·                     tiredness, 

·                     chills,

·                     aching muscles,

·                     limb or joint pain,

·                     diarrhoea or stomach upset,

·                     sore throat,

·                     runny nose,

·                     sneezing, or

·                     loss of appetite. “

 

As many ED individuals cannot control their body temperature it is worth re-emphasising that it is extremely important that you seek medical attention.  The critical point is to carefully monitor the temperature to ensure that it is not continuing to rise uncontrollably, and to seek medical advice if it is.   Insist on speaking with your GP as they will know and understand your concerns; the NHS helpline have a check list to aid diagnosis – they will not appreciate the dangers for ED individuals.

 

Normally when the body is experiencing a rise in temperature fluids are produced, consisting primarily of water, which are excreted by the sweat glands in the skin.  Overall, however, the sweating response to a rise in hypothalamic ('core') temperature is much larger than the response to the same increase in average skin temperature. The process of sweating decreases core temperature, whereas the process of evaporation decreases surface temperature.   For many ED individuals this process is either absent or diminished thereby producing an inability to maintain or control core body temperature. 

 

Cooling methods should be adopted to help keep the body temperature down such as spraying or sponging the body with tepid water or immersion to the neck in a cool but not cold water bath as immersion in cold water can be dangerous.  A fan should be used for whole body fanning and they should be encouraged to drink plenty of water to avoid dehydration. 

 

Normal body temperature is 36-37°C (97-98°F).

 

Unfortunately one of our adult members, Mike,  has contracted Swine Flu, but very kindly shares his experience with us as follows:-

 

“I was at work on Monday and started feeling a little dizzy, headaches (which I never suffer from, so I knew there was something wrong) and had a temperature. I also started feeling achy, and was coughing with a sore throat.

 

I logged onto the NHS website to fill out the questionnaire, after which it advised me to pick up Tamiflu from my nearest outlet immediately. But, because of the other issues with my low immune system, I spoke to my doctor over the phone as I didn't want to confuse this 'Swine Flu' with just another run-of-the-mill infection I get. She advised me that I am showing early symptoms, and that I should use the Tamiflu to prevent any further chest complications. Beware, though, because I am led to believe that you can only ever be subscribed one dose of Tamiflu, so you must be certain and ensure that your doctor is certain, also. I would recommend calling your doctor if you have any of these symptoms.

 

The Tamiflu itself should be taken with food to avoid unwanted side effects. However, the tablets are still making me feel nauseous, so it’s not much fun at the moment! Plus, with my fiancée being four-months pregnant, she's had to move to her Mum's house only three days after we moved into our new home!

 

It's not pleasant, but in a nut shell, get some advice from your doctor. Eat plenty, even though your appetite may diminish, and drink plenty of water! If your symptoms get progressively worse, call 999.”

 

Date: 13/08/2009

< Back

 

Shop Online

Buy big name brands and help us raise funds

Make a donation

Click here to make a donation >

Medical professionals

Click here to go to Medical professionals >

ED worldwide info

 

Accessibility | Terms