Hailey-Hailey Disease Worldwide Support Community

What's is like living with HHD? Quite frankly it's horrible!!!

I was diagnosed around 8 years ago following a biopsy recommended by my inquisitive doctor after years of creams that didn't work. I get it badly under my breasts and arms. The pain is terrible, I blister, puss and it has a horrible odour which makes me feel dirty. Clothes are a problem, what to wear? Has to be natural fibres like cotton or linen and loose. Bras are a joke, just can't wear any although I need to. I could lose a bit of weight, I am a size 12-14. I am considering a breast reduction to remove the need for a bra and am seeing my doctor next week. Has anyone else had or considered this?

I don't know which parent I inherited in from as both have passed on, I am grateful it wasn't pemphegis vulgaris as am aware this is life threatening but still wish I didn't have HHD. I use Dermavate ointment when it is really bad with meopore dressings to soak up the puss which would otherwise leak through my clothing. Friction anywhere in my body results in a breakout. This year I have outbreaks on my face.

1 Reply

Thanks for sharing, Madaboutdogs7. I am sorry you have such a hard time managing this dreadful condition. Have you heard of Low Dose Naltrexone (LDN)? There is a group on HealthUnlocked called LDN Research Trust which can tell you more about it. It has given me and several other HHD sufferers relief, along with some topical steroid creams, antivirals, and a combination of lifestyle and dietary changes. It is so hard to manage this disease. You have our full support. Coincidentally I had a breast reduction 27 years ago, way before I knew I had HHD. It has turned out to be a blessing. I hope you will check into LDN and see if that might be an option for you. It has been a godsend for me and some of my HHD friends.