22/05/2018

EDS Awareness Month May 2018



What is EDS Awareness Month?



Every year in May, people with EDS all over the world raise awareness of the condition by taking part in various events to spread the message and help raise money. Some will do weird and wonderful things depending what they are able to while others may dress up in zebra clothing or paint their face with zebra stripes. The reason for this is to make people understand that having EDS is more than just "being bendy" which a lot of people seem to think when you say what you have and also to make the medical professionals realise how complex the condition is.

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29/01/2018

New Year Health Update





































Happy New Year to you all, I know it probably seems strange me saying this when we are nearly in February but this is my first post this year. I hope you had a good Christmas!! seems ages ago now.

Unfortunately I was quite poorly over Christmas and into the new year with a chest infection, it came out of the blue. My District Nurse called 111 as when she saw me in the morning on Boxing Day I was feeling quite rough with tummy pains, my BP was a bit low, I had a temp and thought I had some gastric bug, I saw a Dr in the afternoon and he did all the checks which were ok at the time and was told viral no antibiotics needed. Within a few days my temp was increasing especially in the evening and was really shivering, my chest sounded terrible and we had to call my G.P out. She prescribed antibiotics which I didn't really want as I have had several courses already for my chest recently. My chest got worse over the week and my G.P came out again and prescribed Steroid tablets and a mucous clearing medication as I find it hard to clear my lungs. She wanted me to carry on with the antibiotics for longer. The infection finally cleared in the end.

I had a follow up appointment at the Royal London with the gastro team recently, everything was good they didn't make any changes to my medication for my bowels and they are keeping my feed the same. I will go back in 4 months.

I had a video fluoroscopy last week for swallowing issues, it was arranged by SALT. I had a long wait from referral to having the scan due to some problem with sending it to the wrong people. The scan itself was painless and very quick.
I was on a stretcher as I went by ambulance, this caused a few problems as they needed me to be upright enough, they managed to raise the back of the stretcher enough to be able to see me on the machine. I had to swallow a small amount of liquid first so they could get a picture of my throat it was fascinating to watch as you could see the liquid in your mouth and then move down the throat. They were happy with this, then I had to have a bit of yoghurt, cake and cracker to see how that went down, nothing went the wrong way which was good, all seemed ok from what they could see. I was told the problem is probably further down but the sensation is occurring in the throat. I suffer with acid reflux which is probably the real problem.



I hope you have stayed well over Christmas and managed to avoid the nasty bugs going around.
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