Does anyone have problems with their voice sounding hoarse? My 12yr old has been having this issue since MY of 2010. The ENT scoped her vocal chords and found nothing. The Dr initially was thinking acid reflux but couldn't find anything.

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I have something called vocal cord dysfunction which affects my vocal cords and makes me hoarse alot. I also have nerve damage to my vocal cords from a neurogenic cough. They also thought mine was from reflux but many tests later confirmed that I do not have reflux! Good luck with your daughter! It may take more than one ENT to find an answer. My answers took a combination of an allergist, pulmonologist and an ENT working together.

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Gumbygirl what is a neurogenic cough?

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Yes, my voice goes on me all the time. I can be very clear and loud sometimes and then I just get gravely. I don't think the antihistamines help with it since they are drying. Tell her to stay hydrated so that factor is eliminated. Also, a post nasal drip will do it to me. You said since May, if it has been a constant issues, it may be related to allergies... mold would be the one that would be around through all those months.

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Where about in the world are you? I have had LOADS of voice problems on and off for yrs but worst in last 2yrs. I'm under a brilliant ENT in Manchester and had speech therapy . I had nodules removed off my vochal chords when I first started teaching then had speech therapy on and off. Last Oct I had nodules removed but still struggled with my voice even with speech therapy. I tried to return to teaching but struggled and ruined my voice again. I had polyps removed in July and now have had to give up teaching. Since vochal chords are ligamentous tissue it OS connected. My chords are lax and .not coming together properly . I am on tablets for acid reflux and a nasal spray to stop sinus problems and nasal drip. I'm still struggling though

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Oh, my husband's aunt has this problem. I hadn't connected it to the EDS, but that makes sense. I am certain that two of her kids have it, even though she is largely asymptomatic.

Thanks for bringing this up. Now the question is, what to do?

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Yes, I have this too. Mine gets worse throughout the day, so nights are tough. Muscle relaxants make it worse too. I haven't seen anyone about it though as it's kinda low on my priority list of health problems. For me, it's certainly tied into my cervical instability and overall muscle weakness in my neck and throat. My dad has this very badly (he's 71) which makes sense because we think I inherited EDS from his side of the family. Hugs to you and your daughter!

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We live in Upstae NY. My daughter has had this annoying cough and almost laryngitis-like voice year round for the past year and a half. She sees an allergist/Asthmatologist every few months. Her asthma is being controlled with Advair and Singulair yet she expieriences frequent tightness in her chest. Her are allergies are to dust and grass. She gets frequent sinus headaches. The ENT cauterized both nostrils because frequent bloody noses (it didn't work). No one can tell me what is wrong with this child or how to help her.......

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I'm still trying to.find a proper solution myself but there is evidence of an eds link. I've been given a few links for articles related to it which I am happy to email out or attach here if that's possible. I will need to do it from my laptop though rather than phone so will have to wait but I will do it ASAP once I have chance. Hopefully between us all we can find some answers. X

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Hi everyone,

I have this too. I went to George Washington University, where the ENT/Vocal Cord specialist told me that vocal cords are connective tissue, so it's not surprising that I should have an issue with them, since I have a connective tissue disease. He tried an experiment with it, where he injected fat into my vocal cords. At the time I was still able to teach, and it really meant a lot to me to sound good when I spoke.

The whole thing cost me over $1000, since insurance didn't cover. It made my voice WORSE for about six months. (The doctor's response, "Oops! Sorry!" -- he never mentioned that it could make my voice worse, btw). But then it got back to normal, meaning some days it sounds crappy, and some days it sounds okay.

The best advice anyone gave me was to drink ginger tea (helps inflammation) with raw honey (helps to soothe) -- the raw part is important.

Hope this helps!

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FRanglass, thanks for the ideas, I like that they are natural being that she is only 12yo. @ Cinderelli...all of the sudden I have a weird bar/stipe right in the middle of this page and it is obscuring your whole post, I am so sorry but I can't read it, is there anyway you could repost please? Thank you everyone for your thoughtful replies.

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Good! I hope they help! Please keep us all posted about how she is doing. We'll be saying our prayers that she feels better!

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Ok so now I have this annoying bar in the middle of each of my Inspire pages. It's the bar that says "recommend, tweet, Facebook" that is supposed to be at the bottom of the page. But I wanted to say thank you for the prayers and articles. So many puzzle pieces too few answers......

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There is an article about speech and swallowing abnormalities in the Research section of the EDNF site - it's under the otolaryngology section:

http://www.ednf.org/index.php?option=com_content&task=view&id=1756&Itemid=8 8889049

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I'll try again. Basically I am still trying to find a solution but have been given some links from research and professors graheame and bird that clearly explain the link between eds/hms and speech problems since as someone above posted the vochal chords are ligamentous tissue. I will post the links once on laptop as can't do it from my phone. Hopefully we will find something to help between us all. X

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A neurogenic cough is basically where the nerves in your vocal cords are hypersensitive and they react to everything. It's also called a sensory neuropathic cough. I had a chronic cough for nearly three years before I was finally diagnosed correctly. I take gabapentin to manage the symptoms and I have also cut dairy and gluten out of my diet and that really seems to have helped. If you want, I have a very good article that I can send you about it. Just let me know what your email is.

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can't remember where i found this but i copied and pasted it into my EDS folder on laptop. Hope it helps

Our organs may become affected since ED is an attack on the collagen in the body and our bodies are made up of collagen. Lungs, heart, uterus, intestines, esophogus, vocal cords- all among the parts of our bodies that become lax and possibly dysfunctional. Some with ED don’t experience damage to the organs at all and have normal life expectancies. But precautions need to be taken when one has Ehlers-Danlos and unfortunately, it is a genetic disorder. Having your family participate in the diagnostic process will help.

¨Hoarseness/Weak Voice

The vocal folds are composed of layers of tissues, easily bruised and
strained due to tissue fragility and weakness. The lungs are also
affected by EDS, leaving some with a limited capacity to produce the
appropriate intensity for speech.

I also copied this and have it for future referrence

There is some small scale research showing a connection between speech disorders and EDS3. Bonnie Heintskill is an SLP and an EDSer, she has written about a connection. The Ehlers-Danlos Facebook page has her article, just ask for it.

Two things 1) Dr. Brad Tinkle has a chapter in one of his books about various speech disorders and EDS. It's in his book on management. Amazon.com has his books.

Dysphonia—A rare early symptom of Ehlers–Danlos syndrome?
J. Rimmera, , , C.E.B. Giddingsb, L. Cavallic, B.E.J. Hartleya

a Department of Otolaryngology, Great Ormond Street Hospital for Children, London, United Kingdom
b Department of Otolaryngology, Royal Free Hospital, London, United Kingdom
c Department of Speech and Language Therapy, Great Ormond Street Hospital for Children, London, United Kingdom
Received 26 June 2008; revised 15 September 2008; Accepted 16 September 2008. Available online 30 October 2008.

Ehlers–Danlos syndrome is a connective tissue disorder characterized by joint hypermobility, skin hyperextensibility and cutaneous fragility. It usually presents in young adults and is rarely diagnosed in children. Voice involvement in young children, to our knowledge, has not been reported in the literature. We present two cases with dysphonia from birth and an eventual diagnosis of Ehlers–Danlos syndrome. The syndrome and its relevance to voice pathology are discussed. We suggest that Ehlers–Danlos syndrome should be considered as an underlying diagnosis in atypical presentations of dysphonia in young children.

Speech and hearing problems associated with Ehlers-Danlos:
Articulation problems
Loose joints and a poor sense of proprioception make it difficult for precise movement of the articulators.
Swallowing problems
The arytenoids are joints held together by collagenous muscles, cartilages, and ligaments. Improper function of these joints creates a problem with tight vocal fold closure during a swallow, leading to aspiration. Weak muscles also make it difficult to maintain good neck posture, another factor involved in swallowing.
Hoarseness/Weak Voice
The vocal folds are composed of layers of tissues, easily bruised and strained due to tissue fragility and weakness. The lungs are also affected by EDS, leaving some with a limited capacity to produce the appropriate intensity for speech.
Although the exact cause of stuttering has yet to be determined, some researchers believe it is multidimensional in nature, caused by psychological and physiological components. People who stutter have been observed to have trouble coordinating their articulators, initiating laryngeal and oral movements, and using proprioceptive feedback in oral movements. Due to muscle weakness, these problems occur in people with Ehlers-Danlos
Asociación Nacional de Afectados por Síndromes de Hiperlaxitud y patologías afines
http://www.hiperlaxitud.com Contacto: aash@medicosconsultores.com,HIPERLAXITUD@canarias.org
Syndrome, and may therefore result in errors in fluency.

EDNF also has a handbook detailing childrens considerations because of EDS that lists speech problems in a couple of places,http://netforum.avectra.com/public/DocumentGenerate.aspx?wbn_key=663677c3-2 8b5-4189-9f30-5ac0c14e1985&Site=EDNF

You might want to printout a copy of it as well since it clearly states that speech issues are a commom problem.

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Well, I was just at big city hospital yesterday seeing immunologist/allergist/pulmonologist at Cancer Center. The physician did pulmonary function-loop study and it shows I too have vocal cord dysfunction. I'd complained to neurologist and PCP about the difficulty swallowing and sore throats off and on and not getting in enough air when I inhale (I also have intrinsic and extrinsic asthma). I have both GERD and constant post nasal drip so I don't know how to eliminate those factors. They don't seem to respond to all the Rx/meds I've tried. I don't do milk or sugary drinks as they always seem to make the phlegm worse. Thanks for posting. I never knew this was yet another not so uncommon finding in EDSers.

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my email is davepartridge@comcast.net please send me the information regarding the coughbecause of my vocal cords
Thank you

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