ECD a post to all who are wondering

[GivenUp]

ok well my last post in the Fibro forums... forget about me not telling you guys.

i feel like since i brought it up i should tell you

anyway i have Erdheim Chesters Disease. i visit and read the forums of the HAA (Histiocytosis Association of America) i do not post, but i read.


there are a few other known people who have it in the world today, the HAA has a forum for it and forums for all the disease that are like ECD

anyway you can let this thread die to the last page


hugs to all and i hope everybody has a great day

[Tootsie]

Ahhhh hun so thats what it is, ive never heard of it b4, i must read up on it ! is it something they can treat/cure or is it something u have to live with ? I will look it up ! hope ur ok ? haven't seen tay on now for a couple of days, i hope she's okay i know she wasn't doing to well.

Tay if ur about chirp in ! miss u hun !

Right little minx i'll check on u tomorrow, keep ur chin up !

big Hug x

[GivenUp]

Ahhhh hun so thats what it is, ive never heard of it b4, i must read up on it ! is it something they can treat/cure or is it something u have to live with ? I will look it up ! hope ur ok ? haven't seen tay on now for a couple of days, i hope she's okay i know she wasn't doing to well.

Tay if ur about chirp in ! miss u hun !

Right little minx i'll check on u tomorrow, keep ur chin up !

big Hug x

they say it can be cured, but it cant. it can be controlled but it does flare it


there has only been about 200 cases of it, ever. so doctors know little to nothing about the disease. also if its not treated in 24 - 48 hours then you... die. i was treated on the 43rd hour.

the only thing they can really help is to keep me from gonig into respitory distress. then respitory failure (which is how they think you die from the disease)

i went into respitory distress, was hours away from death and they gave me all sorts of treatment. then they took me off treatment little by little until i went into respt distress again. the last treatment they took me off was the one to treat ECD, thats how they figured it out


so yeah i have to live with it, its very hard at times


EDIT: also id like to say, tay if you are reading this im praying for you and we all hope your ok!

[Tootsie]

U'll be sick to death (hmmmm maybe that wasn't the best way to phrase that) but ya know what i mean....Uve got to "Stay Positive" sometimes its not possible but ya have got to fight back to retain it.

It was the only way i could change things, when ur down there's only one way u can go & thats up!

So it was me adopting this Postive Attitude that I got up again & refuse to go down no-matter how bad it gets......its not easy but when u have no other answers its all ya can do......so hun u will get through this "Some How, No Matter What" !

Actually i have longer periods of well being than i had, so it has its benefits !

Sure uve got us.......lol

Hugs again x

[GivenUp]

U'll be sick to death (hmmmm maybe that wasn't the best way to phrase that) but ya know what i mean....Uve got to "Stay Positive" sometimes its not possible but ya have got to fight back to retain it.

It was the only way i could change things, when ur down there's only one way u can go & thats up!

So it was me adopting this Postive Attitude that I got up again & refuse to go down no-matter how bad it gets......its not easy but when u have no other answers its all ya can do......so hun u will get through this "Some How, No Matter What" !

Actually i have longer periods of well being than i had, so it has its benefits !

Sure uve got us.......lol

Hugs again x

yeah i agree, having a positive attitude does help! and it does suck, i have had so many friends and loved ones pass from things worse than i have. my hubby for example, that was a time where i had somebody to actually care for me when i was sick.

it really does suck.... having something that almost no doctor knows about.

some days i puke my mind out and hurt all over, and other days i feel good. then i have those inbetween days, the tpye where you are in pain and sick but you still feel good.

its also very weird.. or confusing? to have something that even you dont know about, seriuosly i know nothing of this disease. the only thing i know is that it causes respitory distress and Respitory failure. it is weird to not know how this affects me, kinda like its hard when you are looking for a diagnosis.



but the very sad truth is that there will never be a good treatment/cure. there are drugs that show improvement. but they dont help for long.

the numbers for this disease are.... just insane. i read that its a 1 in 10 million chance to be born with this. and the very weird part is that it only shows at the ages 20 - 40.

but then again 1 in a 10 million chance, thats wrong. it should be more than 1 in every 200 million, or any other very high random number lol. becuase think of it. in all the world has probably had around 10 billion people on it (not at once) and there have been only 200 cases. so 1 in 10 million sees to be wrong lol

anyway, everything can be fought, you may not be able to win but you dont know if you dont try


hugs to you and all! have a great day everybody!


(in case u didn't notice, lol i am going to use pink and bold to type from now on )

[GivenUp]

hi guys and gals,

Tootsie! where are you i hope your ok, and i am very worried about taylor! please come back to us!

[Tootsie]

Hi Little Minx, hope u had a good day today ?

Im well, not long home from work, im so tired already had a few zzzzz's, def having an early nite tonite !

Ive bn wondering about tay also, i hope she's ok !

i'll give her a shout !

Tay where r u ?
nope....no answer !

[GivenUp]

Hi Little Minx, hope u had a good day today ?

Im well, not long home from work, im so tired already had a few zzzzz's, def having an early nite tonite !

Ive bn wondering about tay also, i hope she's ok !

i'll give her a shout !

Tay where r u ?
nope....no answer !

im good i guess, a little bit of vomitting nothing unusual tho.

yeah hah i got off work about 3 hours ago im fairly tired myself!


also i am starting to get very worried about Tay! i really hope shes ok, Tay please shout back at us!

[Tootsie]

Hopefully she'll turn up soon.......its funny for all us who have never met one another ya miss them when theyre not about.......do hope she's okay.

I was looking up about ur illness....one thing i come across was a lady who has bn trying different treatment......she's just had 6mths of chemo & they say she's made a good improvement !

what treatment are they offering u ?

[GivenUp]

Hopefully she'll turn up soon.......its funny for all us who have never met one another ya miss them when theyre not about.......do hope she's okay.

I was looking up about ur illness....one thing i come across was a lady who has bn trying different treatment......she's just had 6mths of chemo & they say she's made a good improvement !

what treatment are they offering u ?

yeah lol it is funny, but when we all get along on here i guess it just makes us feel like we know eachother some how


since my diagnosis i have been given Naproxen 500mg it has helped some, its like asprin x 10 and its an anti imflamitory.

i might try chemo but i am so afraid of things like that, thats most likely why i have not tried it already


thanks for the suggestion! if i can get the courage to do it i will