Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi gang,
I often dont vent on my bad days as a caretaker for my daughter with Downs and HS but today I am venting.... I am so fed up with this crummy disease...... We have been onthe paleo diet now for over a year...Still got the stupid disease, still have breakouts big time during her periods, and I feel like it is all my fault that I cant fix this for my daughter.... My heart breaks for her everytime we have a big bobo and right now she has a mother of a bobo in her private area..... She is on an antibiotic and we are doing the soaks twice a day and using Prid drawing salve..... I go around thinking to myself what if I do this or that would that help? We have taken away so many foods that I am not willing to take away another food group...... I feel like a person who is loosing the war..... We go see the derm doc on the 25th of April but I know the drill. She will suggest nonstop antibiotics or spiractolone...... not sure which is worse or has the worst side effects...... I love my daughter with all my heart and I would jump off the San Francisco Bridge for her if I knew that she could have an easier time in life...... I am really down right now and just wanted to say that all of you that have HS...I totally feel your frustration and pain..I live with this crappy disease that holds my daughter hostage every day.... How I wish there was more research and people with HS werent such guinea pigs in the medical community...... sorry so long winded..... am having a bad lets say month...Thanks for listening, Tangerinebear xo
I often dont vent on my bad days as a caretaker for my daughter with Downs and HS but today I am venting.... I am so fed up with this crummy disease...... We have been onthe paleo diet now for over a year...Still got the stupid disease, still have breakouts big time during her periods, and I feel like it is all my fault that I cant fix this for my daughter.... My heart breaks for her everytime we have a big bobo and right now she has a mother of a bobo in her private area..... She is on an antibiotic and we are doing the soaks twice a day and using Prid drawing salve..... I go around thinking to myself what if I do this or that would that help? We have taken away so many foods that I am not willing to take away another food group...... I feel like a person who is loosing the war..... We go see the derm doc on the 25th of April but I know the drill. She will suggest nonstop antibiotics or spiractolone...... not sure which is worse or has the worst side effects...... I love my daughter with all my heart and I would jump off the San Francisco Bridge for her if I knew that she could have an easier time in life...... I am really down right now and just wanted to say that all of you that have HS...I totally feel your frustration and pain..I live with this crappy disease that holds my daughter hostage every day.... How I wish there was more research and people with HS werent such guinea pigs in the medical community...... sorry so long winded..... am having a bad lets say month...Thanks for listening, Tangerinebear xo
reading other posts that you don't want your daughter to take drugs such as spiro or humira but if it's going to help her and improve her quality of life maybe you should consider it?? I know there are a lot of side effects with taking meds but sometimes the benefits outweigh the negatives. I don't want to sound preachy so will stop here but I just don't want anyone to suffer with this...good luck with everything.
I could not imagine the pain you are going through watching your daughter have to deal with this..
I will pray for your strength and endurance.
Blessing to you and Hang In There!