Day 4: How To Caregive For Hidradenitis Suppurativa Patients

[@AlexandriaJohnson-jp2pb]

I really appreciate these videos. It's been about five yrs now since ive actually heard a name for this condition. Ive been dealing with this since 11 or 12 yrs old and i am now 43. Thank God ppl now know this condition is not directly attributed to personal hygiene.

[@lilyofthevalley4435]

I am my sons caregiver as well as a CNA full time. He is 27 used to be very independent. But now has a very severe case of this illness and will soon be having surgery. He is no longer able to work, drive, walk, or barely go out. He is severely depressed and sometimes will just lay in one spot literally all day. So now ge will be undergoing alot of surgery in his groin area, and his arm pit. I do not perform his wound care, but I would. He does not do a very good job of it. But anyway, It is a labor of love. I also had/have this condition but I am in remission or maybe somewhat cured due to Weight loss, diet change, bleach baths, and antibiotics. He would do none of that and that's how we got to this point where it has completely taken over. Thank you for the informative video. GOD bless you all.

[@theahsid]

Thank you so much for being vulnerable enough to tell not only your own personal story but your perspective as a caregiver of someone else with hs. We can only imagine the complexities you have to face. We have a free HS basics booklet with a bevy of resources for patients. We would love to email you a copy if you're interested. Reach out to [e-mail] if you're interested. We are so much stronger together!

[@hayleywalker295]

Hi thank you for sharing what do mean bleach baths? Like lilterly? Could u explain more please xx

[@lilyofthevalley4435]

@@hayleywalker295 Well, adding bleach to your bath water. Maybe 2 capfuls. Soak in it, then shower after, and make sure to moisturize after. Really helped me. Btw, thatpost was 2yrs ago and my son is now on Humira, doing better. Liked his drug addiction to his violent outbreaks. So he has worked on that as well. Back into life, much happier!👍🏼