do you know anyone with a disease called Multiple Hereditary Exostoses?

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email or phone number? any age children to adults so I could make them feel better.
I sure do....


http://www.angelfire.com/il/Dukett/MHE.html  (+ info)

Do ear plugs make you dizzy surfing? I'd do anything to get rid of these exostoses ear bone blockages.?

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I just can't give up surfing and have tried home alcohol and flushes. What else?
yeah, I get that a lot...  (+ info)

can fixed bridge be the possible cause of developing exostoses on the outside of the top teeth?

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Yes mechanical stress due to a bridge can be the cause of it.  (+ info)

do gum exostoses ever go away or even reduce in size with time?

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They generally stay the same or get bigger with time. They can easily be removed with surgery, if it's a cosmetic concern  (+ info)

Hereditary Multiple Exostoses?

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My mom has Hereditary Multiple Exostoses and she has a big tumor in her pelvis area and we all can feel it but the pain is becoming so intense for her we have been to Shands in Gainesville Florida almost four times now and they tell her the same thing they tell her that there is nothing to do and i don't believe them. there are specialists for this disease there and no one has given us an answer that we can accept. My mom is only thirty-six and the only real option they have given her in the last year is to have her leg amputated but no one wants that especially her and i love her too much to watch her go through this pain much longer.
PepsiG,

I am very sorry to hear about your mom's condition.
There are a number of doctors and medical institutions throughout the country treating MHE. Sometimes finding the best medical care requires traveling to major research hospitals for second and third opinions. If the doctors in Gainesville were not able to help your mom, I strongly suggest she seek additional consultations. I suggest you contact the MHE Coalition and the MHE Research Foundation and ask to speak to patient advocacy representatives.

http://www.mhecoalition.org
http://www.mheresearchfoundation.org

These groups will assist you with identifying the experts in MHE, the doctors who are on the fronlines of treatment and research.

I hope this information is helpful.  (+ info)

what would you do if a family called you bandureco i am disable? bandureco is a insult bay the way.?

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and if that family member said also God made you like that to punish you? she lives in miami. I have the disease called Multiple Hereditary Exostoses.
I heard she gets fired everyday because she even insults her boss. also she scams my uncle her husband she sighed and she tryest to buy something with them. she insults her own father. I think she insults almost everyone she meets.
Every family has at least one crazy person. Ignore and do the best you can!  (+ info)

I'm having 'surfers ear' surgery...need some feedback?

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it's called External Auditory Canal Exostoses, and i know i'm out of the water for 4-6 weeks...but what's the post operation recovery like? (e.g. pain in the ear, lack of hearing etc...)
"Surfer's Ear" is a condition which is caused by repeated and prolonged cold water exposure. For some unknown reason, the bone of the outer ear begins to grow. Over many years this can completely close off the ear canal. This will often lead to recurrent ear infections and hearing loss, which is why you need the surgery.

One person who had the surgery reported, "It is NOT a painful surgery. It is done on an outpatient basis. There may be some pain when the sponge gets pulled out after two weeks. Picture wearing boots and stepping into mud. Now pull out your boot out of the mud."

These sites may be of interest to you if you have not already seen them. Interesting question ... I had never heard of "surfer's ear"!  (+ info)

does Himalaya toothpaste contains fluoride?

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http://www.himalayahealthcare.com/products/dental_cream.htm

it contains
Vaikranta bhasma (Fluorspar) is a combination of lime with fluorine. It is a natural source of fluorine, which prevents dental caries.

Sanskrit / Indian Name : Vaikranta bhasma
English Name : Fluorspar
Chemical Name : Calcium fluoride


Calcium fluoride (CaF2) theoretically contains 51.1 per cent calcium and 48.9 per cent fluorine, where the quality and quantity of fluorite is commercial use strength. It is referred to as fluorspar. It has important therapeutic value when used as a trace element. This natural form of fluoride is useful in arthritis and 'splints', helps to break up exostoses and indurated glands, and also strengthens teeth and prolapsed muscle and veins, to re-establish elasticity.

i want fluoride free toothpaste
You can see a line of fluoride free toothpaste at http://www.tomsofmaine.com/products  (+ info)

How can I get a pot prescription when the law passes in New Jersey?

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I suffer from a condition know as Multiple Hereditary Exostoses. What are basically jagged tumors grow around my joints and can cause severe pain. The bumps end up ripping or hooking on to part of my muscle, with pain so bad I've already had three surgery's on my knees in four years. The only thing that stops my knees from aching is pot, my stomach is too sensitive for painkiller meds, and I tried getting morphine injections but my knee got even more messed up. Do you think this is a valid reason to get a prescription? I know that by laws in other states chronic pain is a valid reason but I'm not terminally ill just in a lot of freakin pain.
Pot doesn't kill braincells, but it will most likely worsen your short-term memory, which is a small price to pay for all the benefits. Read this http://www.chrisbrunner.com/2006/12/05/top-10-marijuana-myths/.

Go to your doctor and tell him your condition and that you would like a prescription for marijuana. From their, it's up to him.  (+ info)

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