Saturday, 7 April 2012

Keeping Vocal - Speech and vocal problems in EDS and how to manage them

Speech and vocal problems are very common in EDS. In fact it is one of the earliest signs that a child may have EDS that is now becoming more known. Speech delay, selective mutism, extremely low-volume speech, and other speech problems are very common in early years of EDS children. Speech problems, swallowing problems, frequent coughing and choking are common problems that continue through adulthood.

Speech delay was probably one of the first signs there was something wrong with me as a small child. I didn't really speak until I was about four years old. Even then it was only when absolutely necessary that I actually spoke. I think I was even sent to a speech therapist to find out why wasn't talking. I was very quiet, and when I did eventually speak it was with a very soft, low-volume voice.

Thankfully as I got older I got more confident with speaking and eventually it was hard to shut me up LOL.
However, now with EDS affecting me more than ever, speech and vocal problems are common parts of my day.

The main problems now are that my voice, or rather my vocal chords and throat muscles, get tired very easily. The effect of this is pain, throat spasms, and fatigue. This results in my voice getting quite croaky, low and manly sounding, and either quiet or strangely louder.
I get sore throats a lot and I can also get quite breathless whilst speaking, however this breathlessness is more to do with POTS I believe.

As I've got older I found I struggle more pronouncing words that I used to have no problem with. Words that start with a W, WH, and WR and when a R word comes before or follows a W word e.g. ‘white rabbit’, or ‘real writing’, take a lot of concentration, and sound just wrong. It frustrates me because up until a couple of years ago I didn't have these problems pronouncing words.

Looking after the EDS voice

Thankfully as a trained singer I am very aware of how the voice works, problems that can develop, how to protect the voice, and treat problems. The voice is basically a group of muscles, and like any other group of muscles that are worked regularly and harshly, they need good maintenance and care.

If you went running every day you would warm up your muscles beforehand, know when to stop pushing yourself too hard, and how to care for sore muscles.
The voice needs looking after, especially in EDS.

Here are some things you can do to look after your EDS voice, as well as deal with some of the common problems you may have:

1. warm up your voice if you're going to be talking for a long time e.g. given a presentation, speech talking on the telephone. Warm-ups include humming, making exaggerated chewing movements, moving the jaw around in circles in both directions, gently moving the neck around, rubbing and patting the neck and face gentle to encourage blood flow and pursing lips e.g. kisses.

2. Take regular sips of water, at room temperature, when talking.

3. Avoid relying on throat medicine e.g. lozenges, medicine etc too much because these numb and coat the vocal cords and throat muscles which means you can damage them more without realising. Instead soothe sore throat muscles with warm (not hot) drinks and rest.

4. Pace yourself. Just as we EDSers need to pace our energy usage, those of others with voice problems should also pace ourselves vocally. If you know you are going to need to talk a lot later rest yourself and avoid talking too much beforehand. After talking for a long time, or if you start to get sore and tired vocally, rest your voice afterwards.

5. Avoid straining your voice such as screaming, shouting, talking loudly, talking for a long time etc. Also be aware of certain environments and situations that can cause your voice problems such as dry atmospheres, smoky atmospheres, breathing in lots of cold or hot air, smoking, drinking strong spirits, eating spicy foods, eating foods that you know cause your throat to get scratchy or swell, and catching colds and flu.

6. Although typical throat lozenges aren't great to have all time, there are some products which are good to use and will help you vocally. Vocalzones are lozenges that I use regularly when I'm going to be singing. Instead of soothing the throat, they open your airways and throat which improves vocal quality and helps the voice. You can buy Vocalzones and similar lozenges over-the-counter. Ask your pharmacist for lozenges for speakers/singers not for sore throat.

There will be times when no matter what you try you still struggle vocally. There are times when I can't speak, speaking is really difficult, usually because of brain fog, although at times because my throat vocal chords are just too tired and sore.

Because of this I have some communication apps on my iPhone. ‘Buzzcards’ and ‘Quiettalk’ my favourite and can be found in the App Store. These apps enable me to communicate with people when I can't speak by either typing what I want to say or selecting a pre-typed card.
For more information and to see how I use these you can watch my video about from my youtube channel at the end of this post.

I hope these tips and information is helpful. If you would like more information or advice on specific problems contact me. I'm not a doctor or in any way authorised to give medical advice however I can recommend ways to protect and look after your voice as a vocal teacher.


  1. Thank you for posting this! As a child (and really still) I was teased and nagged for having such a low voice. I hear the words, "what?" "speak up!" "I can't hear you, I'm sorry," so much in day to day life, it makes me hate to talk at all.

    I find myself dreading situations when I know I will have to speak very loudly (ordering in a loud restaurant, a concert) because my voice has a maximum volume that to most people, still isn't loud enough. But physically, I just can't be any louder and people don't understand that.

  2. hiya, great blog entry! i sing and had been struggling to warm up my voice, it seems to take so much longer for my voice to wake up compared to the others in my group so i'm gonna try the movements etc that you wrote about- thanks!

    the info about the losenges is also fab, gonna look out for them or get some online as i think the'll really help me.

    i also struggle with R's and other letters and it gets worse as i get more tired. everyone i've spoken to about it thought i was just very odd as they'd never seen someone struggle with the letters i do, like i do.. so its very good to meet someone else like me!

    Happy Easter!!


  3. A great write up about vocal problems in EDS. Tips are very useful for readers. Thanks for sharing information. Keep posting

  4. Thanks For Sharing the information.

  5. I now have so many answers to so many questions because of your blog. My son was wrongly diagnosed with autism (he is an outgoing social bug who loves hugging everyone he meets)and I have tried to find a reason for his swallowing problems and his speech delay that changed in severity from day to day. his snapping hip at age 5 and his pain plus fatigue that was so unusual for his normal energetic self. I passed this horrible syndrome on to him and he seems to have it worse then me. At least he won't have to fight for years like I have for a diagnosis. Maybe he can get the treatment I should have had that might have made me a little more capable. Thank you for leading me in the direction of a correct diagnosis.for once I don't feel so alone.

  6. I had NO idea this was to do withe eds but I can relate to the whole of this post,, I have just discovered you're blog but the more I read the more I love it, I'm discovering so much more about and I think it's such an accurate and honest portrayal of living with the illness, I think you have such a good blog and I hope your eds isn't giving you too many problems at the moment! X