Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Toronto Support Group Hidradenitis Suppurativa

lianna Message
20 Sep 2014, 05:56 PM

I have a relative who has suffered from Hidradenitis Suppurativa since he was a teen. He is now 30 and has not found any relief. We are interested in finding out if there is a support group in Toronto, or if there is any interest in forming one. I am willing to host this event, if there are others who are willing to join :) It is a very difficult disorder to manage and as I understand it people are too shy, ashamed and/or afraid to admit to suffering from HS . I have read there are more of us (relatives, patients and friends of patients) out there looking for help. Please leave a note if you are interested. I will check back here daily and promise to do my best to help us all connect. There is power in numbers.
bernie Message
21 Sep 2014, 10:06 PM

Has he been tested for Insulin Resistance? And also he should have his androgen levels tested. I tested positive for both and take Metformin for the IR and Spironolactone for the elevated androgen. Works for me. I've been in remission for years now. Bernie
lianna Message
21 Sep 2014, 11:38 PM

Bernie I will tell him . He isn't ins res but will check on the other. Insulin res is the test for diabetes (all day in the lab with some tests and drinking something first) am I correct? Thank u for responding !
bernie Message
22 Sep 2014, 02:29 PM

No, Insulin Resistance is the term for someone who is pre-diabetic. The test is a simple A1C fasting blood test. Same with the androgen test (but fasting not required for that test) which can be done at the same time. Now, I am a woman (most HS patients are), so I can't guarantee that my experience will be the same for a man. I tripped over a paper by Samuel Thatcher, MD that tied the insulin resistance and the androgen levels to HS. There is also a paper a Dr. Birnbaum which list HS as a symptom of androgen dysfunction. So I tested for and started treatment for both and have been in remission for many, many years. Best to both you and your relative. HS is a difficult, nasty, disorder but I believe it can be treated. Bernie ps if you want to talk, let me know.
lianna Message
22 Sep 2014, 11:34 PM

I want to thank you for giving me this information. For the first time in years I feel like there is hope. If I do need to talk about this, perhaps I will send a note through here (?) I will be looking into reading (and trying hard to sort through the medical terms) some studies on HS, in particular Dr. Bimbaum and Dr. Samuel Thatcher. There is some indication that he might suffer from the AD (or some variation), but this is just something I am trying to sort through now. I am very hopeful that a doctor we found in T.O. will be able to help us. Thanks so much. Lianna …you have no idea how grateful I am that you took the time to help.
bernie Message
23 Sep 2014, 01:52 PM

Lianna, I can't believe that I found this link as I only had the essay in printed form but I did. This is written by Tammie Ferris who I consider a friend though I've never met her. She used to run the HS Hotline and I spoke with her more than once when I was trying to find treatment for HS. She is the one who guided me to the IR and AD aspect of HS. Read should help you a lot. Your link test" Hope the link worked. If not search for " Birnbaum Androgen Dysfunction Tammie Ferris " it will be label Long Article. Bernie
lianna Message
23 Sep 2014, 09:00 PM

Hi Bernie, I managed to find the article and copied into my email so I can print it off later to read. You are a wealth of both information and help - I know I've just said so, but I am ever so grateful.
freelikeabird Message
29 Nov 2018, 03:13 AM



But then I used the method of Claire ( not her real name)  but she uses that

name in her blog /article and got herself healed.


It should be a good idea to follow one  who has been there & done something that

gave good results.

I followed her method and it worked.

The hardest part is  learn & be gluten-free because gluten antibodies causes HS.

Once you are well you can go back to eating gluten.



Read Claires blog at