any suggestions on how to live with ED?

anyone have suggestions or opinions on how you can deal with ED in the best way?(we might be able to get people to learn about ED...)

Hey!

Do you suffer from ED yourself? Keep updated. I'm looking into setting up another 'part' of this site solely with information on Ectodermal Dysplasia, tips, stories from our members, and so much more. It's a relatively new forum so this may take a little time!

I have ED. I'm 20. I guess I cope pretty well nowadays because I've handled it throughout my life. It's hard to determine, as a whole, how to live with ED. Ask away!

Mike wrote:

Hey!

Do you suffer from ED yourself? Keep updated. I'm looking into setting up another 'part' of this site solely with information on Ectodermal Dysplasia, tips, stories from our members, and so much more. It's a relatively new forum so this may take a little time!

I have ED. I'm 20. I guess I cope pretty well nowadays because I've handled it throughout my life. It's hard to determine, as a whole, how to live with ED. Ask away!

We have only had to make a few adjustments for our little boy Ryan (aged 2.5 years).

He has a relatively mild form of X linked HED.

Firstly we had to get a new car for his mum with air con. Last summer before we knew he had a condition he would just go ballistic in the car even with the windows wound down and the fan on.

This year the hot weather recently gave us some problems with Ryan going to bed. During day we avoided letting him play outside between 11 am and 3 pm but other than that he was fine. However getting him to go bed was a nightmare, initially we thought he was just playing up as kids sometimes do, however having got a portable aircon unit for his bedroom he has gone to bed fine with no problems the last fews nights.

I just put it on for a hour or two when he goes bed

I would recommend anyone to get one in this weather!!!!!

When we go out, visiting family, kiddies parties, etc., we just need to keep an eye on him to make sure he does get too hot. Went for a meal earlier in the year and the Pub had the heating on for no real reason, so had to keep taking him outside to cool down.

Other than the above, and having to apply cream to him, no major impact.

His mum has three cousins with the condition and they all seem to get on with life.

Ultimately how he / we cope is down to attitude. Naturally when we first found out we were depressed for a couple of days. However, I think on the list of genetic conditions you could be born with or have child with, X-HED is one of the less scary ones and you should always look on the bright side. We are delighted to have such a happy, bright and loving little boy.

I was actually thinking about the portable air conditioning units myself, but are they not quite expensive?

It's anightmare for me to drive because the car I have at the moment is WITHOUT air conditioning. I get along though, I have to...I can't afford a better car yet

Lovely picture of your little boy!
Are his cousin's parents aware of this forum? Maybe it would be good for them to come on here and meet more people, the newsletter CONTAINING the information promoting this forum is due out very soon!

Mike wrote:

I was actually thinking about the portable air conditioning units myself, but are they not quite expensive?

It's anightmare for me to drive because the car I have at the moment is WITHOUT air conditioning. I get along though, I have to...I can't afford a better car yet

Lovely picture of your little boy!
Are his cousin's parents aware of this forum? Maybe it would be good for them to come on here and meet more people, the newsletter CONTAINING the information promoting this forum is due out very soon!

We were lucky and got a second hand air con unit on the cheap from my work.

However, they are available new for around £200, which is good value for money when you consider it should last you a number of years and make life much more comfortable.

I would like one for our room and I don't have ED. It is nice to go in Ryan's room and cool down.

We will mention the society and forum to the cousins later this month when we see them.

Brilliant! I may have to look into getting soemthing like this, its been hard enough this year already and the summer hasn't even kicked in properly yet!!

Does your son suffer with Asthma? If so, what about hayfever? I suffer from both but they are related, thats also a nightmare!

Mike wrote:

Brilliant! I may have to look into getting soemthing like this, its been hard enough this year already and the summer hasn't even kicked in properly yet!!

Does your son suffer with Asthma? If so, what about hayfever? I suffer from both but they are related, thats also a nightmare!

Hi,

No, fortunately Ryan does not seem to suffer from Asthma or hayfever.

However he does seem to have rather a lot of nosebleeds, mainly at night. I would point out that he suffered these before getting the air con so there is no connection with the ai con unit.

Do you find the doctors have no knowledge of ED whatsoever, when Eileen (my fiancee) told the doctor about Ryan's condition he was blank even though it must be on his medical records.

I receive e-mails from a internet group / web ring thingy about ED and apparently there was recently a programme about ED on Discovery, but I don't know if that was shown in the UK as the e-mail seem to be from the USA.

It may well have been a US based program because I couldn't find anything on it either.

I contacted the NFED to try and get this forum linked to their site too but I wasn't successful for reasons I can't disclose, but I'll be making a renewed attempt in the future.

Yes, doctors everywhere I go have not heard of ED. I was very lucky to have the same GP and paediatrician throughout childhood and until I was about 14. My doctor then left and I was too old for my paediatrician!!

My doctor now, though, is actually researching ED and so is our district nurse which is wonderful, and should make things a lot easier!!

Mike wrote:

It may well have been a US based program because I couldn't find anything on it either.

I contacted the NFED to try and get this forum linked to their site too but I wasn't successful for reasons I can't disclose, but I'll be making a renewed attempt in the future.

Yes, doctors everywhere I go have not heard of ED. I was very lucky to have the same GP and paediatrician throughout childhood and until I was about 14. My doctor then left and I was too old for my paediatrician!!

My doctor now, though, is actually researching ED and so is our district nurse which is wonderful, and should make things a lot easier!!

I think the worst was our normal dentist, we took Ryan when he was about 2 and he had no idea why Ryan didn't have any teeth and that point we had not heard of ED.

He told us that Ryan didn't have a tooth coming through at the top as they ALWAYS come through at the bottem even though we could see the white of the tooth under the gum and it came through about 2 weeks later.


To be fair the female doctor and nurse at our sugery are both very good and were as interested as us to find out why Ryan did not have any teeth and referred us to the geneticist and then onto the Dental hospital.

I used to have to travel up to Newcastle General Infirmary for all of my dental work. Nightmare but I have very fond memories of my dentist. Lovely guy, he was!!

We have traveled to the Newcastle Dental Hospital alot this past year and although this has sometimes ment a long day for a few minutes appointment they are fantastic.They have been very patient with my son and this now makes procedures easier to perform even when unpleasent.

I've found that keeping water nearby is VERY crucial in the summer. Experience will teach someone what their limits are, and water helps immensely. I've found that water drenched t shirts on really hot days can help, and i've also used them as a means to stay cool while at sporting practices.

Another interesting point is that as i've aged (from child to young adult) i feel that i can tolerate higher temperatures better. Maybe it's a mental thing, but it's some hope.

Swell319 wrote:

Another interesting point is that as i've aged (from child to young adult) i feel that i can tolerate higher temperatures better. Maybe it's a mental thing, but it's some hope.

I am an 18y/o guy from Texas also with HED, and I can definitely agree to this. I think it is just being older = tolerate more.

Dealing with ED? Find something that gives you confidence. I joined theatre at my high school and it was probably the best thing I ever did. Acting not only made me more social, but also was a great way to meet new people. Heck I might be an ugly dude but I was voted Mr. NSHS at graduation and graduated 5th in my class of 400. It's gonna suck leaving all my longtime friends and going to college in Indiana haha (Purdue University).

Dentures are annoying but necessary. Make sure they fit correctly, you can get them adjusted (ie: shaving off parts that are tight on the gums) but too loose is bad because they will fall out that way. Fortunately, I have never lost a pair of dentures You don't need that "fixodent" gel junk or whatever, they should stay in fine without it. Just clean 'em regularly.

Dealing with heat...don't bother with the vests and hats and neckties...seriously. I was self-conscious ENOUGH just because I look different, I felt pathetic whenever I wore those things and they don't retain cold well enough to make a difference. Somehow I managed to handle the Texas summer heat...mostly if I got hot playing outside I went inside, ate ice, poured cold water on my head, jumped in the pool, or stood in the fridge. Spray bottle fan things at wal-mart were great for outdoor trips to the fair or whatever.

Make sure car/house air conditioning works well... the worst thing is when my car has been outside (ESPECIALLY IN SUMMER) and I have to drive in the stifling heat...its terrible not gonna lie haha.

Add me on facebook (Ryan Allen) if you wanna talk, peace out guys and good luck dealing with ED!

Hey, my name is Josh. I am 22 years old and currently live in Florida. Just thought I would share my life story as brief as possible to help many people out. I grew up with 2 great parents, one of which was a nurse which made life MUCH easier for me, and I'd like to share a lot of my knowledge on to everyone. For those of you who may not know, there is a foundation in the united states which I believe is open internationally, it's called the NFED, or National Foundation for Ectodermal Dysplasia. I believe it is NFED.org, but you can type NFED into google and its the first link that shows up. I grew up in Iowa and stayed there until I was 19. The summers were very very humid, but there were many things that helped. Air conditioning is a must for starters. Also if you would like to play sports, think smart about when you're in the field. I was a big time athlete, and here is the best scenario I can share with anyone. I was a baseball player which most of the games were played in July and August, the hottest months of the year. So wearing long pants, long socks, shoes, heavy shirts, and a black hat on top of that, we had to stay ahead of the game. We simply brought a cooler full of ice water to every game as well as 2 huge jugs of water. Now, in the cooler we kept around 4 wash cloths.Before the game started, we would literally soak my socks in the ice cold water just to keep my feet cool during the whole game as well as my shirt. Whenever I was in the dugout and was hot, we would pull the wash cloths out, cover my body and throw them back in to get cold when they got warm. One water jug was ONLY for dumping on me throughout the game, and the other was ONLY for drinking. There are many unconventional ways to get around the no sweating thing. Now with this you have to accept that some parents and children will just look at you funny, but in the end your teammates will get a kick out of it and know that's just who you are, and will joke around with you about it. Actually some of my teammates started to do the same thing and said we were genious, which I got a kick out of and it made me feel really good.
Same type of thing can be done at family outings to a zoo or something like that. Simply head to the bathroom, take your shirt off, run it under the sink and ring it out a little then throw it back on and you have a cool shirt to wear for about an hour. When it dries or gets kind of warm you can just repeat the process.
Now anyways, I also had a big issue with my teeth. I lived with it until I was about 16. Growing up I did try dentures once but I couldn't handle the humiliation, so I just simply smiled with my lips sealed. Once I hit 16 I went to several oral surgeons. I had all of my teeth removed except for my front two and my top molars. They drilled holes down into my bone, 6 holes on top and 4 on bottom. The took what they call a "bridge" or simply a denture with screw holes in the back side, and put screws into them and screwed them down into the bone so now they are a fixed implant. I have a full smile, which are cleaned profesionally every 6 months by removing the screws and pulling them out. Other than that, they are just like normal teeth. Now you're probably wondering how expensive it is. It is really pricey, but here is where insurance comes in. You can talk to your insurance about it, and if they deny it because it's not a "necessity" simply fight their claim with proof that you can't get the right nutrition for your body since you are incapable of chewing and swallowing many foods due to the lack of teeth. My whole operation cost about $75,000, but we only had to pay around $5,000 out of pocket which was amazing.
I also saw a post about nosebleeds earlier. The best way to solve this issue is to buy a nose salene, and use it once a day. Squirt one or two squirts up your nose, let it sit for a second and blow your nose out. It will help bring some of the mucus out, as well as keep your nose moist. The main reason it bleeds is due to your sinus cavity being dry. Also you may buy an air purifier, as well as a humidifier I believe it's called.
I would love to hear more input about whether my post was helpful to others, as well as any other questions you may have. I have a LOT of advice, and it's hard to sit here and think of everything, so please...shoot away

-Josh

Great post Josh, was interesting to read it and thanks for sharing your experience and tips.

I can't understand why teeth inplants are so exensive. Probably not even a diamond cost that much! I was considering to insure my children and then claim when they are 16. The thing is that they only have the lower 4 incisors missing (and 2 above, but the other 2 are large and spaced that it does not shpw any defect) so they can eat and I think the claim would be rejecetd, as they can chew and eat.



Do you have hair problems?