About Me
My name is Denise (AKA HS Mama Bear), I'm 54 yrs old. I fill many roles in life - wife, fur-mommy, daughter, sister, aunt, niece, granddaughter, friend, mentor, and advocate. Following a 27-year career, I've been unable to work for 9 years due to several disabilities. I can be silly and fun, but I know when to take things seriously. I take our illness and my advocacy very seriously. And I love knowledge!
My HS began at the age of 8. I have a severe case of Hidradenitis. Underneath the skin HS "lumps" & abscesses ranging in size from a pea to as large as a cantaloupe (plus), it covers a majority of my body. And can be incredibly disabling for me. I also get the typical DEPs (blackhead-like), the pimple-like pustules and chronic wounds that are open and ulcerated.
I have undergone several wide excision surgeries through second intention (more are still required). I will be blogging on my HS journey in the future.
Besides HS, I have several auto inflammatory & autoimmune illnesses. These come with several serious medical issues. The past 10 years most notably, have been beyond hard. I do the best I can every day, every moment. My continuous struggles with illnesses and pain serve as a constant reminder to stay humble. This IS a blessing. Helping others through advocacy fills my life with purpose and happiness.
MY Experience & Credentials:
First and foremost, I want to say. I’m not sharing all this with you out of arrogance or ego. Over the years, some within the community have asked for this very information. While I’ve provided scattered replies in the past, I now have my own platform to collect everything in one place for those who are interested. Being transparent is something I take pride in. I want my community and viewers to know that I am knowledgeable in both HS and advocacy. And I’m also a WARRIOR. I offer my expertise and personal experience of living with hidradenitis suppurativa for 46 years, alongside 10 years of multiple chronic illnesses, 36 years of advocacy, and ongoing education. With appropriate, trustworthy, and applicable sources.
I am committed to my grassroots values of; “We're Human 1st & Patients 2nd”, “Knowledge Equals Empowerment”, & “Inclusivity Only”. Maintaining this is crucial to me, even as I continue to evolve.
Experience Synopsis:
•36 Years Overall HS Advocacy
•29 Years HS Patient Advocacy
•28 Years Mentoring Individuals | Independent Researcher
•25 Years HS Author
•24 Years advocating for HS by educating students, residents, clinicians, researchers, etc. on various aspects.
•5 Years HS Organization Co-Founder (retired)
I’ve had the pleasure of collaborating with various researchers, pharmaceutical researchers, physicians, universities, and clinics. My responsibilities include reviewing, vetting and recruiting participants for a wide range of survey studies and clinical trials. Assisting on study development and providing feedback on research before IRB approval.
Life & Passion Knowledge:
My life (from age 18) has been dedicated to learning & researching Hidradenitis Suppurativa and all the moving aspects. Gaining knowledge from other HS patients, through personal interactions, support groups, or experts (clinicians, researchers, scientists, etc.). It's been an amazing journey.
DETAILED EXPERIENCE BELOW
I’ve participated in numerous dermatology, advocacy-focused seminars, and Hidradenitis specific conferences, and symposiums. Both face-to-face and through virtual means. Since 2015, the majority have been virtual because of my poor health. However, their educational value is just as remarkable.
From 1994 until the present time:
•2024 Connecting the dynamics of antimicrobial response across scales
•2024 Heart Mind Institute Rewiring Your Brain World Summit
•2022 to 2024 HS Spotlight Summit (HSF)
•2014 to 2023 SHSA
•2023 Homeopathy 101 Class
•2021 to 2022 Integrative Dermatology Symposium IDEOM (virtual)
•2021 to 2022 Pediatric Dermatology Research Alliance PeDRA Conference (virtual)
•2021 to 2022 European HSF Conference virtual
•2021 MassBio Patient Advocacy Symposium (virtual)
When I can’t attend, I make it a priority to catch up on the event or symposium afterwards.
I have also completed CME HS courses in dermatology, integrative medicine, holistic practices, and advocacy.
Snapshot of some certification. I just love it all.
And I 💜 Research
I am constantly staying up-to-date with HIDRADENITIS SUPPURATIVA research and developments. This is very important to me and a huge passion.
I’ve also been engaged in numerous collaborative research endeavors.
My Published-Cited Co-Effort | Co-Author Research On Hidradenitis Suppurativa
Hurley Staging Training for Hidradenitis Suppurativa Patients HERE
Biologic use in Hidradenitis Suppurativa patient perspectives and barriers HERE
Hidradenitis Suppurativa surgery: patient perspectives and barriers HERE
Optimizing Hidradenitis Suppurativa clinic visits, patient perspectives HERE
Support Group Utilization and Perspectives Among Hidradenitis Suppurativa Patients HERE
Collaborative Research Acknowledgments
No‐shows to Hidradenitis Suppurativa clinic visits, patient perspectives HERE
High Unemployment Rate in Patients with Hidradenitis Suppurativa despite High Educational Attainment HERE
Hiding in Plain Sight: An Interpretive Descriptive Study of the Impact of Shame on Patients with Hidradenitis Suppurativa HERE
The challenging yet super fun - Vetting & recruiting for various medical magazines, TV shows, podcasts, and interviews
- National Geographic
- MediaFour17
- Optomen Television
- Pixeldust Studios
- WedMed
- NBC News
- Men’s Health Magazine
- Self Magazine
- Skin A & E
Numerous other elements of hands-on HS projects
Moderator for HS summits. I've helped plan and execute successful events, fundraisers, walks, and organizations. Created and initiated support groups for face-to-face interaction. Starting from 2001, I’ve overseen the management of multiple HS support groups. Founded and manage our thriving Facebook support group, Hidradenitis Suppurativa Global Support & Resources Group. I’ve also developed multiple social media platforms for our community. Successfully oversaw growth, promotion, and management.
It has been a busy journey throughout the years. Advocacy has been hard, challenging, fulfilling, empowering and I can’t imagine my life without it!
My intentions with my platform
I have extensive knowledge about HS, and I’d like to share it with you. This has always been and continues to be my passion. I have a plethora of tips, articles, resources, and research highlights. In addition, there will be content that aims to inspire and empower you.
There will be multiple resources available for you to expand your knowledge, develop self-advocacy skills, navigate your HS experience, express yourself, help others understand, and increase awareness.
I value having a space to preserve my material and leave a meaningful legacy.
In addition, I’ll be sharing a few of my personal blog posts with you. Reflecting on my HS journey, which encompasses the ups and downs, mistakes, successes, and valuable lessons acquired throughout my years there.
The stigma and secrecy surrounding our illness creates enough isolation and shame. We should not be hidden away, and our illness-related matters should be open as well. I will strive to keep you in the loop with special HS announcements, keeping you informed beforehand, not afterwards (as much as possible). Additionally, providing you with factual knowledge.
Please note, I decided to stop collaborating with editors on my articles for several reasons. Despite potential grammar errors (mostly caused by brain illnesses), my content is still reliable, factual, and solid.
This platform is a work in progress and it can be time-consuming, but I’m dedicated to my favorite motto of approaching it one day at a time. I appreciate your understanding in advance. I am looking forward to sharing more with you.
I do not get paid to do this. I donate my platform, efforts and time.
Be well. And choose kindness!
Medical Disclaimer: The content on this platform is for informational, educational, and support purposes only. Its purpose is NOT to be a substitute for professional medical advice, diagnosis, or treatments.
FDA Disclaimer: Statements regarding ANY materials that may have treatments, procedures, supplements, regiments, etc., that have not been evaluated by the FDA and are not intended to diagnose, treat, cure, or prevent any disease or health condition.