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What is your bullous pemphigoid (BP) story? Let's share!

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What is your bullous pemphigoid (BP) story? Let's share!

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Courtney_J

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23/11/2021 at 16:19

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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Hello everyone,

Welcome to the bullous pemphigoid discussion group on Carenity! emoticon cute

This space is dedicated to you to share your questions, stories, fears, advice, and much more with other members!

As you know, the diagnosis of a chronic illness, especially if it's rare, can be a life-changing experience. So let's talk about it together!

What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today? Feel free to share your story here!

Take care,
Courtney

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Courtney_J

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12/01/2022 at 16:14

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 8 in the Bullous pemphigoid Forum

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Hello all,

How are you doing? Have you seen our BP community here? 😊

Don't hesitate to share your story, your questions, concerns, or anything else about life with bullous pemphigoid! @Huwcymru@RozHall@grannysyb@Abee74@yogiburr@camuk1@Mossy1@Andy B@AoifeGrace@Ralphieffc@Lynnken@Peterkind

Take care,

Courtney

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Courtney_J, Community Manager, Carenity UK

What is your bullous pemphigoid (BP) story? Let's share! https://www.carenity.co.uk/forum/bullous-pemphigoid/living-with-bullous-pemphigoid/what-is-your-bullous-pemphigoid-bp-story-lets-share-4401 2022-01-12 16:14:36

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KayGoodchild

20/11/2022 at 19:17

KayGoodchild

Last activity on 12/12/2022 at 12:20

Joined in 2022

1 comment posted | 1 in the Bullous pemphigoid Forum

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@Courtney_J

my sister has been diagnosed with pemphigus foliaceus and is still being investigated. She is in terrible pain and has sores and blisters on her face, neck, back and front. I believe she has eczema or psoriasis too. She is still waiting to see a dermatologist at the hospital. She has tried everything so far but not since recent diagnosis, she has an appointment with specialist on Thursday. She cries and screams with pain every day. Is there any advice anyone can give. She is taking painkillers and antibiotics but she is still in pain and suicidal. Please, any advice out there? X

EllaUK

02/09/2023 at 21:20

EllaUK

Last activity on 24/11/2024 at 23:38

Joined in 2023

4 comments posted | 3 in the Bullous pemphigoid Forum

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@KayGoodchild Hi I hope your sister has found the cause and the right treatment for her condition since you posted. But if not, have the specialists looked into a possible link with any medication, including over the counter products? My mom had bullous pemphigoid and at none of the appointments or consultations did they discuss her meds or past meds and that there might be a link. When we found out there is a link between BP and furosemide water tablets, and asked to change to a different water tablet, blisters stopped forming after just a day. I hope this helps, although I hope even more that your sister has already found a treatment that works. All the best.

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ATLDeen

15/07/2022 at 17:17

ATLDeen

Last activity on 10/09/2022 at 17:08

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3 comments posted | 3 in the Bullous pemphigoid Forum

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I have always been unlucky when it comes to my skin. When I was younger, I was allergic to all types of washing detergent and fabric softeners- would break out in hives all over. Then later, I found out I had psoriasis. That’s what I thought my BP was at first. But the patches were a bit different, then came the blisters. I am used to skin problems but it’s always such a bother. I’ve tried the steroid creams and tablets, but it doesn’t really work. For me, the creams are better than the tablets, but still, for me I usually just wait it out (I don’t like the stickiness of the creams, personally).

LizziB

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12/09/2022 at 09:59

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LizziB

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Last activity on 02/04/2024 at 00:46

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280 comments posted | 6 in the Bullous pemphigoid Forum

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Hi everyone,

Courtney didn't get many responses for this discussion question, so I'll tag a few more members to see if they are willing to share their BP experiences.

@DawnMH @POSTIE9 @annyh46 @Serdie @Tig387 @triciabarrie @Gloria @OAMAAM @Jayne2951 @Suestone @Rory289 @Jazziboi1

What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today?

Take care,

Lizzi

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Lizzi

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