A letter and call for awareness for HS patients:
Two Patient Communities With One Cause For Awareness. The Hidradenitis suppurativa (HS) & Polycystic Ovary Syndrome (PCOS) Connection.
Please find in a lot of ways our extended family and friends over at the “Cysters and Their Misters (PCOS Support)” group on Facebook”. Find yourself within this conversation. I promise you are connected one way or another.
I will explain.
If you read my stuff, this is one of the long ones to read. Stay with me please and read in full – I beg you. I need your help as usual. This is a matter of us together saving real lives.
Lives we have seen lost in our HS community by the handfuls yearly and for which we can together do something tangible about it. Right now we can do this together.
I hope more so than anything I have ever written and shared from my heart over these last 2 years becomes top of mind in the HS community. And as a result physician awareness will be realized. The results of our collective patient-first, self-advocacy, being present at every appointment we have.
Serious face on – story time ( I appreciate you ).
There may have been a time where you did not know another HS patient. But if you are reading this now, this is no longer true for you, and perhaps has not true for a very long time.
This is a topic I have a strong sense of urgency to create awareness around and have for some time. Not just baby steps and little increases in publishing activity on this topic for patient education and awareness over time.
I want to make the lack of awareness issue around this topic specifically disappear quickly all together and be left to the past forever.
Once a patient on either side of the PCOS to HS circumstance discovers a possible connection, there is a very real actionable path to be sought within their own preventative care. Possible life-saving measures that might not be looked to lack thereof.
As a HS patient, I suspect at least 20% of those I can reach with this post live with this connection. Meaning both HS and PCOS are present for you. Yes, 20% of you that are reading this now. If not 35% to 40% of you, if just crunching some loose numbers with what data is available as of today.
Both HS and PCOS are comorbid, or coexist, in 20% of the HS patient population. That is more than likely a pretty conservative figure.
If you fall on the other side of the math and are not challenged with both, please share this conversation with other HS patients you know and love.
This could be a simple gesture and possibly one of the most important actions you could do for another like you – perhaps more challenged than you at the moment in different ways.
If we are not educated to the best of our ability in our own care, to be able to work with physicians within a successful patient-to-doctor relationship; accurate and/or multiple diagnoses, proper treatment via evidence based precision medicine, and long-term quality of life as a result falters.
We live within this reality now as patients of an Orphan Disease, and only have one way to go from here. No one is going to hand solutions to use though, as well we know.
I am not kidding nor speaking emotionally or hyperbolically as I often do regarding various general topics.
This is different.
The quote below is a statement from a key study and is used in a short video I made recently for both of our communities, and it is dead on.
“Female patients presenting with HS should prompt investigations for underlying PCOS and insulin resistance.”
I don’t assume, but I know that works the other way around to some degree. I have seen it in our conversations. I bet there are some of you reading this now that would happily quantify my words.
Metabolic syndrome, Cardio Vascular Disease, Heart Failures resulting in a fatality, Diabetes and Insulin Resistance, ect, ect, ect.
Does this make sense now? How many HS patients have you seen pass on? I have seen one too many.
Sure HS in not fatal in itself, but when we pass on due to other comorbid variables that complicate each-other, what do you hear most often is the cause?
A heart attack perhaps?
I imagine some of you are thinking and would even reply to say severe and untreated infection? Right? Sometimes, but very rarely does that happen or has it been documented. Infection in an HS patient resulting in a fatality. It is and has been very rare, almost not worth a mention, an edge case.
But Metabolic Syndrome and Disorders…
In my 2 years in this work I have, and even today, which nudged me to hit this topic hard again, bore witness to a PCOS patient who had stumbled upon her Hidradenitis Suppurativa (HS) diagnosis after many longs year without answers or clarity.
I know I sound of a broken record very often, but of course, our HS community and our friends reading this now can shake their heads in acknowledgment that we all have shared by mass majority a similar path and story of discovery.
The story of hiding HS. The stigma, taboo, shame, guilt, fear, and the societal norms and status quo that has until very recently for hundreds, if not and I would say thousands of years, kept the Hidradenitis Suppurativa (HS) circumstance in so many ways in the shadows and to a rarely afforded whisper globally.
The story of us as patients not having answers, even worse, not understanding or even having the pursuit answers and knowledge available is universal, correct?
Every time I share on this topic, and I have been now for these 2 years fairly often – like clock work patients on both sides of this conversation make the all important connections for themselves.
Why now, and where is all this coming from?
Our friends and PCOS Super Advocates both Ali and Ashley of the “Cysters and Their Misters” Support Group have been so great to allow us and the HS community to overlap as relevant with some important work for awareness. To raise awareness around what is the very real PCOS and HS comorbidity variable, or for lack of a better term, what is the “PCOS and HS Connection“.
In many ways, into the future, however, the HS and PCOS community are able to collaborate to help people, I personally feel we do now and will owe that to Ms.Sams.
Maybe another way we can actively work to keep her memory alive.
This is a big deal I think. Well, I know it is. Do you?
Generalizing loosely based upon just the very few studies published to date where the HS and PCOS connection is explored, approximately 15 to 40 percent of women challenged with HS disease activity also are predisposed and/or present with POCOS.
Any way you look at what is already out there clinical findings, the prevalence of this comorbid relationship is undoubtedly very high.
You will find the 3 key studies I focus on in the short film that has been being shared below, and for which are interpreted loosely in this letter I write to HS patients.
TOPICS OF MENTION:
1. Cysters and Their Misters (PCOS Support) group:
2. Angela Sams – You Are Loved Eternally And Will Be Missed – Angela’s Hidradenitis Suppurativa Story
3. Our Patient Stories Program Dedicated to Angela:
4. (VIDEO) Hidradenitis Suppurativa (HS) and the Polycystic Ovary Syndrome (PCOS) Connection
ABSTRACT OF MENTION:
1: Holzer G, Straßegger B, Volc-Platzer B. [Cutaneous manifestations of metabolic syndrome]. Hautarzt. 2016 Dec;67(12):982-988. Review. German. PubMed PMID:
2: Zivanovic D, Masirevic I, Ruzicka T, Braun-Falco M, Nikolic M. Pyoderma gangrenosum, acne, suppurative hidradenitis (PASH) and polycystic ovary syndrome: Coincidentally or aetiologically connected? Australas J Dermatol. 2017 May;58(2):e54-e59. doi: 10.1111/ajd.12438. Epub 2016 Feb 2. PubMed PMID: 26831949. SOURCE
3: Kraft JN, Searles GE. Hidradenitis suppurativa in 64 female patients: retrospective study comparing oral antibiotics and antiandrogen therapy. J Cutan Med Surg. 2007 Jul-Aug;11(4):125-31. PubMed PMID: 17601419. SOURCE