Author Topic: Hidradenitis Suppurativa Articles  (Read 141309 times)

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Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #100 on: Monday August 04, 2008, 04:51:06 PM »
Thanks caz, all support is very welcome. x annmarie

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #101 on: Monday August 04, 2008, 05:42:56 PM »

Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #102 on: Monday August 04, 2008, 10:05:29 PM »
Hi bunny, just left a post for fd there. You gave him some good advice. Wish i'd met someone like you 20 years ago! Take care x annmarie

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #103 on: Monday August 04, 2008, 11:01:50 PM »
Hi anniemary, my niece has  recently been diagnosed with this, and I feel for those of you who have it. I get dreadful 3rd degree burn like wounds in those delicate places too, the blisters burst and I have blisters on the dermis sometimes. It is SO painful! I'm most comfortable in a cotton nightie, especially in the warm weather we are having in the UK. The heat is miserable for me. It is so difficult for men though, unless they wear a kaftan! (and why not if one is just at home?) FD if you see this what do you wear to be comfortable?
Bunnie

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #104 on: Monday August 04, 2008, 11:13:19 PM »
 :)Funny thing is I joined in here in 2005..and I have now found more threads..(on HS)
a big DOH Lana!!  :laugh:
I was in several HS groups other than skin cell and maybe it is me..one of them
depresses me to the point that I can hardly go there.
Have any of you ever been treated snooty in regard to this disease by a Doctor?
I have and also have been told that he/she did not even what to SEE it..see a
specialist..!
Thank you all for your help and Bunnie for all the research and info.

Just got in from work and working on supper.
Hope to talk more with you all.
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #105 on: Tuesday August 05, 2008, 05:17:46 PM »
Hi lana, wanted to answer your question regarding snooty doctors.  I was admitted to hospital about 10 years ago with a really nasty abcess(size of a melon) on my left inner thigh/groin. Was in agony. They took me to theatre for incision and drainage. Outside the theatre, they asked me would i mind waiting until they did a small procedure on another patient as mine was a "dirty job"! I was mortified! Unfortunately i was so embarrassed about my condition already that i agreed. I felt then that i was "dirty" and hated myself. Hindsight is a wonderful thing but i am so much stronger now and would never let anyone speak to me like that again. There is a horrible stigma attached to hs (maybe it comes from within) but we all know that our personel hygiene is probably better than most peoples. We have an illness that we can do nothing about and there are times when i feel insecure and embarrassed with it and i SHOULDN'T. (my husband goes mad when i say i am embarrassed.He says he loves ME,lumps and all,) :-* :-* bless him. I hope you have similar support.   Take care,   annmarie x


















Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #106 on: Tuesday August 05, 2008, 07:14:39 PM »
 :-*   God bless 'im..I have that kind of husband as well Anne Marie.
He is severely disabled (and retired late 60's now).
The last Dr. I went to went out of his way to allay my embarrassment
and hurt..(he touched my underarm area without gloves & he had JUST
Scrubbed his hands!)  :laugh:
But he also told me that I am scrubbing my skin too often and too hard!
LOL, I can't win!!  :laugh:
When I was very young, I guess late 20s (not even sure) I had 3 small
daughters and I used to think I had some sort of horrible STD, and I was
very faithfully married for quite a few years..(I knew I had done nothing to
have one). I guess this is one way that ignorance (mine) is NOT good and
could possibly be dangerous.
I am so thankful you all are here to talk to.

I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #107 on: Tuesday August 05, 2008, 07:23:03 PM »
 :)AnneM..I forgot to tell you also, that the last reg. specialist I
went to see was very pleasant and kind to me and assured me that
he sees the condition 'all the time', but his (assistant) kept giving
me the nastiest looks,,NO not paranoia..she really did..that made me
so sad.  ???
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #108 on: Tuesday August 05, 2008, 08:03:50 PM »
Hi lana, glad to hear your husband is supporting you but very sorry that he is disabled. Must be very difficult for you both.  I was diagnosed with hs in my teens and never knew anyone else with hs until i entered this forum. I live in a small town in n.ireland. I know what you mean when you said about the lack of information being dangerous. I have the disease very badly in the groin and very personal areas' When it first spread to these areas, i was convinced i had cancer of the vulva. I have had recent extensive surgeryand  have been assured it is the hs. I nearly had a breakdown at the time.   Reports would suggest that stress plays a contributing factor in the onset of hs. I had my first daughter very young. She had a very serious immune deficiency and tragically passed away when she was a year old. It was during this time that i had my first major flare, so maybe there is some truth in it, What do you think....  ANNMARIE xx

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #109 on: Tuesday August 05, 2008, 08:19:28 PM »
Hi ladies can I just draw attention to two or three things that you ladies have said, because it affects all people with skin conditions.
 
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waiting until they did a small procedure on another patient as mine was a "dirty job"!
I would say many of us on here have had similiar things said to us or in front of us. There was a thread concerning just that some time ago on here, I wonder if I can find it?
A "specialist" once said to me in front of my husband , after returning from the examination room into his office, that I had scabies and I should "go home and consider as to with whom I had been sleeping with!" I just walked out, and then burst into tears! My husband never let it drop after that. I was livid! I wish now I had reported him, but you know what its like when you have something going on and nobody seems to know what it is? I was scared to do anything because I wasn't sure if I would get treatment. Needless to say I never went back to him.
Quote
but i am so much stronger now and would never let anyone speak to me like that
Absolutely! I am not rude , but choosing my words carefully, they are told in no uncertain terms and without any shadow of doubt, what I think. They are just people! nobody needs to be afraid of asking as many questions as they like, and to be sure of all that is said. Take a dictophone with you if necessary.
Quote
I guess this is one way that ignorance is NOT good and could possibly be dangerous.

No truer words were spoken! That is my main worry and why I try to explain things, because ignorance can kill you! believe me!
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but his (assistant) kept giving me the nastiest looks,,NO not paranoia..she really did
I would politely ask directly to the person, "Is there something wrong? you are looking at me as if in disgust". I wouldn't be able to stop myself! The words would be out of my mouth before I could catch them! I HATE that! It goes against all good medical practice and principals, in either doctors or nurses, and I would definately draw attention to it there and then. Two hours later is too late!
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but we all know that our personel hygiene is probably better than most peoples.
I have heard loads of derms say that, the reason being because they bathe more regulary for soothing comfort and ease alone!
Bunnie

Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #110 on: Tuesday August 05, 2008, 08:24:59 PM »
hi bunny. so sorry to hear about your niece. I have to admit that i have been a bit selfish of late and have only been thinking of myself. Today i read up on your illness bunny... oh  pet it is terrible. You are such a pillar of support to everyone and are always giving out great advice. from me to you :hug: :clap: take care annmarie xx

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #111 on: Tuesday August 05, 2008, 08:30:37 PM »
Oh Anniemary! how absolutely dreadful for you. :hug: I'm so very sorry.
Stress exascerbates an already manifesting condition; however in some cases severe stress can incite these genes due to the imbalance of stress hormones, but don't forget you must already have the genetic predisposition to start with. Only people who carry genes with a predisposition to having an abnormal immune response can ever actually have one, these conditions do not occur in people who do not have these faulty genes. Big hug for you.
Bunnie

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #112 on: Tuesday August 05, 2008, 08:35:16 PM »
 :)  I thought it funny that my last GP told me to quit washing SO often
and SO hard!!  ;D
I mentioned to my hubby on the way home from that specialist office how
that PA kept looking at me unkindly and really rudely..he said "awww baby she
probably didn't mean to" Yeah right!!

Bunnie, I went and studied a bit on what you have..and I want you to know my
kindest thought and wishes of health are with you as well. Are all these things
related ? :o
Bunnie, If I may I need to send you a very short PM..it is just a site related
question. Is that OK?

I will be in and out this afternoon and evening and I just thank you all so very
much for your kindness and for being here. :-*

Bunny the Lords blessing and care to your sweet neice as well.

Anne Marie..I am so glad I 'met' you here! :)


I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #113 on: Tuesday August 05, 2008, 08:41:14 PM »
Anne Marie.. Backtrackin' on me self a bit here..LOL, I cannot understand
how ANYONE could use the word 'dirty' even within ear shoot of a patient.
I think I would have (wanted) to say..'well please don't bring any nasty in
here with me!!'  :'(
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #114 on: Tuesday August 05, 2008, 08:48:43 PM »
 :) Anne Marie..I think that definitely could have contributed to the
flare. I am so deeply sorry that occurred for you.
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

Offline anniemary40

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Re: Hidradenitis Suppurativa Articles
« Reply #115 on: Tuesday August 05, 2008, 09:06:05 PM »
ah thanks you guys. I have 2 beautiful children now a boy and a girl.
 
lana with ref to "dirty". At the time i wanted to curl up and die. If it was now, i'd probably be arrested for what i would say :lol:
'm glad i met you too girl.... :hug:

Bunny thanks for the picture, soooo cute. you girls are way to clever for me. Had to get my son to show me where the capital letters button was!! lol

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #116 on: Tuesday August 05, 2008, 09:22:29 PM »
Oh hell! I just lost my post!
Are all these things related ? If you mean autoimmune diseases Lana, they are in the sense that the underlying cause is the same. Mutated genes predisposing you to ever having an autoimmune response.
Not everyone carrying the predisposition will have one, but they are more likely to. People who do not have these mutated genes cannot have these abnormal immune responses targeting "self antigens". I have done many posts on it, and it applies to all autoimmune diseases. If you click on my blog and scroll down to "Autoimmunity" its all there. Anything you don't understand I can explain.
Bunnie

Offline Lana-84

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Re: Hidradenitis Suppurativa Articles
« Reply #117 on: Tuesday August 05, 2008, 10:19:15 PM »
You both can prolly teach me a great deal..I think MOST
people do not understand these serious skin diseases. LOL,
I even studied some medicine,,NOW I really feel dumb..perhaps
it was that ole' avoidance thing in me again!!  ;D
Bunnie, did you get a PM from me? I sent it while ago.
I JUST FOUND OUT TODAY WHAT I HAVE! I HAVE HAD IT FOR OVER 30 YEARS!! I AM GLAD TO FINALLY KNOW!

LANA :)

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #118 on: Wednesday August 06, 2008, 09:59:29 AM »
Yes lana, I replied straightaway. Look in your inbox on the messages tab.
Bunnie

bunnie

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Re: Hidradenitis Suppurativa Articles
« Reply #119 on: Wednesday August 06, 2008, 10:08:41 AM »
Hi ladies,
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Had to get my son to show me where the capital letters button was!! lol

Don't worry anniemary, the more you use the computer the more adept you will get at it. I knew NOTHING, about this game. I got my computer 2004 , the chap set it up for me from pcworld, and left me to it! I remember him being in bits, when just as he was leaving, I asked him to show me how to switch it on and off!
I must say too, that Nick and some of the guys on here are brilliant at explaining things. Take a look on the forum page at the Bits and Bytes thread.http://www.skincell.org/community/index.php/board,12.0.html
Bunnie