By Ellen on Monday, June 05, 2000 - 05:42 pm:

My 20 yr. old daughter has just been given a
"probable" diagnosis of Type III Ehlers Danlos. I
have just discovered this bulletin board and see
several references to sinusitis and allergies.
Does anyone have any links to sites where this is
discussed? It would be so interesting to tie
together some of the problems she has suffered
from for so many years. She has low IGA, which
the doctors say explains her frequent infections,
but so far we haven't been able to keep her well
for long, even with prolonged use of antibiotics.
Does anyone else have low IGA? Thanks!

By Andrea Thomas on Monday, June 05, 2000 - 05:42 pm:

Dear Ellen

I have EDS III/Hypermobility Syndrome, and I suffered from near chronic rhinitis and sinusitis with every cold, and I have low IGA. So did my mother, and so does
my sister. Our mother, who believed in conventional medicine and in nothing else, was constantly on antibiotics which, of course, after a while did not work any more
and then she had to be given different ones. The antibiotics also affected her stomach quite badly. My sister has now given up cow's milk (but not other dairy
products) and says that her chronic nasal symptoms have virtually disappeared. She had been given this advice by a doctor in complementary medicine. I was given
the advice to try and boost my immune system (by a nutritionist friend of mine) and start taking high doses of vitamin C and flax oil (I have now reverted to cod liver
oil because I had difficulties digesting flax oil). I started taking these at the beginning of the year and I have never had a cold or sinusitis since.

I hope this does not sound like unsolicited advice but "if they don't help they won't do any harm", so maybe your daughter would like to consider one or the other of
these "cures", or all.

Good luck - Andrea

By Robyn on Monday, June 05, 2000 - 05:43 pm:

Hi... I have EDS type III. I was diagnosed in my mid-20's back in 1994. I personally have not had problems with sinusitis. My mother on the other hand also has
EDS and she used to always have problems with allergies and sinusitis. Seems like she's allergic to everything. It could be related to the EDS but I am new to this
board and plan on checking out the possibilities of the relationship. I am finding right now that I really need to learn more about this rare disorder.

By Claudia on Thursday, November 30, 2000 - 07:37 pm:

I was diagnosed with chronic sinusitis long befor EDS. I also have pallups (is that how you spell it) I basically take psuedoephidrene every day, which makes my heart a little jumpy, but I can function better. I was told I would need surgery to clean out the scar tissue, but no thanks. I had no idea other EDS sufferers were getting sinusitis too. I was also wondering if other people with sinusitis get frequent dry eyes, I never leave the house without my visine.

By Vicky in England on Monday, January 15, 2001 - 02:30 pm:

What I love about this chatroom is how all the pieces of the puzzle fit together. I have only recently been told that the arthritis like pain I have in all my joints is due to their hypermobility; it took this site for me to find out what that meant. I have had some degree of joint pain for a while, but have also had problems with recurring ear nose and throat infections since I was 14 and was diagnosed with Viral Fatigue Syndrome. I have had hayfever, resulting in asthma for a while too, which coincidentally started around the same time as I got tendonitis in my knees. If i could only show some medical eveidence to everyone who has called me a hyperchondriac then I would be such a happy buny. The way I see it, having something like HMS, or EDS throws your system offIt is so busy dealing with the painetc, that it can't cope with anything else life/pollution etc throws at it. So I take 500mgs of Vit C to help my immune system, and three St Johns Wort to help me cope with getting on with life, and so far it has improved. For the first time in a long time, I got to nurse my boyfriend through the flu, and not the other way around. It helped settle the score for all the times he has had to look after me!

By NANCY KANE on Thursday, October 09, 2003 - 10:24 am:

I HAVE THREE SONS THAT ALL SEEM TO HAVE CHARACTERISTICS OF EDS. THE MORE I READ THE MORE I REALIZE THAT I MAY ALSO - DOUBLE JOINTED, EASY BRUISING, HEAVY MENSTRUAL CYCLES, TERRIBLE ALLERGIES AND SINUSITUS. HOW DID EVERYONE GET TYPED. I WANT TO KNOW WHAT TYPE MY THREE BOYS HAVE. IF YOU CAN HELP I WOULD APPRECIATE IT.

By Michelle Cheam on Thursday, October 09, 2003 - 08:16 pm:

Hi Nancy.

First of all the first thing you should plan is a trip to a rhumetologist(sp?) to see you and any child that you have concern for. They can do a simple history, examination, and a few tests to rule out worse forms of EDS. Within a few short weeks you can have an answer for all of you from a good doctor. I am not sure if anyone here is a doctor, but even if you met one online they would probably suggest the same thing.

Now on to the type you and your children might have. EDS does run 'true' in a family. This means whatever type of EDS any of them have all of them will have the same type if they do have it. For example: I have EDSIII and both of my girls are already hypermobile and complaining of joint pains. If they do in fact have it they will know for a fact it can only be type three. If you have it this (type three at least) that means each child does have a 50/50 chance of also having it themselves.

Dont panic if this is true. The more our children can learn about proper excercise and caring for thier joints the more injuries they may be able to advoid. Simply by cutting down on impact excersise and increasing the very low to no impact excersise can help advoid also advoid problems by keeping them strong, fit, and moving.

I made it to 27 before they found mine. I had been complaining about joint and back pain since before I was even a teen. I was constantly told I had growing pains, sprains, strains, bruises, or other soft tissue injuries. Growing pains is now an outdated concept. It should never hurt a body to grow and any growing pains should be see by a doctor or specialist as soon as possible.

I also lived a very rough and tumble life including co-ed football, soccer, basketball, fighting, and compeitive weight lifting. (Yeap a HUGE tomboy lol) I knew I felt better while in shape and strong, but I didnt know these were all bad for me. I always pushed and would keep going when already injured to stop the names of wimp and pazy from coming my way again. If I would have learned self control and moderation then my life would be alot better now that it is.

Like I said I was put off for over half my life. I was even told to stop faking it more than once. I was called lazy as an adult because I was stiff and it hurt to even move most days. I got tired of hearing this from doctors and even counselors. They told me to get over it and get back to doing what they wanted me to do. I was depressed and scared for awhile they were right.

My mother might have EDS, but she definately has fibromyglia and MS. She said to go to a rhuemotolist to get checked and I finally did. I was told I have EDS, arthritis already, and burcitus right there after and pyhsical examine, and had several tests ordered to find exactly what type of EDS and arthritis were ordered. They checked my heart for prolapse(which happens alot with one or two types and can be dangerous) which I didn't have and most with EDS don't. I went back in one month and was told what type and started learning all I could since then.

So now my mission in life is to teach my girls to care for themselves and wht excersise the can do to prolong thier joints like swimming, water aerobics, and stationary bicycling. These might seem a little dull to a child but the more thier joints are guarded the better.

If you suspect it in yourself or you children see a rhuemitologist. The earlier you can help you and your children the better it will be for you all in the long run. There is medicine to help, pyhsical therapy help some, and lifestyle changes in some cases. Worse comes to worse you know for sure, but if you are lucky at least hopefully one or more of your children might advoid this troubles. Either way if you think this is a most likely problem see a specialist. I wish you good health and happiness for you and your children.

Sincerly,
Michelle