I. My Experience with a Great HS Healthcare Provider by Athena Gierbolini

As with most patients, I have had varied experiences with medical care professionals treating my HS. Most have a very limited understanding of HS, and a very small toolbox for treating this disease. It usually goes something like: antibiotics, bleach bath, incision and drainage if needed, and concludes with a conversation about weight loss and smoking.

My first encounter with an HS Specialist changed me and my progression of course profoundly.

Right away, her approach was different than any other healthcare provider I had met. We started with a conversation about my medical history and what medicines I had used that worked and did not work. She paid attention and asked a lot of questions about what types of medications I was comfortable with.

When it came time for the exam, she meticulously went over my skin and explained what was happening in each area. She answered questions and took her time making sure I felt educated and informed on the state of my disease. When she finished examining my skin, we discussed treatment options that included medication and procedures. Surgery had always been off the table for me because I work a lot and I live alone; recovery would be difficult and require lengthy periods of time off, or so I thought. She explained that, in my state of disease, surgery and medications would be best, then offered a surgical option that met my needs. She walked me through what an excision would be like, the recovery process and how beneficial it would be. It was a huge bonus that she would be doing the procedure herself in her office and I would not have to go under general anesthesia, but she would instead use a local (injection) anesthetic.

A few weeks later, I was in the office, undergoing that procedure without any pain. My Hurley Stage 3 (severe) HS was gone, and the post-operative pain was minimal. I was able to do the dressing changes by myself, and the recovery went exactly as she said it would.

I have gone on to have three more procedures with her, and I am seeing good success with the medication she has prescribed. We plan to get more aggressive with medication as soon as my prescription insurance kicks in. For now, the HS is gone in two areas of my body, and I have so much more freedom to move than I have in a very long time. I feel comfortable communicating with her and addressing my concerns. She is fast in response time, and will accommodate me if I need an unplanned appointment for a steroid shot (intralesional steroid injection).

It is so important to have a knowledgeable and dedicated healthcare provider to manage this disease.

My life has drastically improved since my first appointment, and my anxiety has gone down considerably because I know I have a healthcare provider who is fighting this disease right along with me.

II. Working with HS, It Can Be Done by Christine Yannuzzi

Trying to maintain a career with HS can be daunting; tips on wound care, odor, dress codes, accommodations, and knowing how to deal with human resources (HR) can help. While it might seem uncomfortable, the best course of action is to start with your HR department and your direct manager. Bringing a guide to HS with you can help by opening up the lines of communication and giving your supervisory team a better idea of what you are dealing with, without having to go into personal details (see resources below). Remember, your personal health information is protected but the more transparent you are, the more likely you are to leave the interaction having achieved your goals.

Addressing your wound care needs at work can be difficult, but being prepared for emergency situations can help. Keeping a “go kit” can make this easier. Some items to include might be extra undergarments, cleansing wipes (witch hazel wipes are great), gauze, lidocaine, small scissors, tape, and medical grade honey (such as Medihoney®) or other healing ointment. You may also want to consider keeping small disposable bags for any soiled items (dog poo bags work great, as they are cheap, small, and often scented).

Dealing with odor can not only be hard, but extremely embarrassing. Mitigating odor by using products such as chlorhexidine wash (Hibiclens®) may help. Wearing loose-fitting clothing can be more comfortable. While talking about odor is far from easy, the more you share with your coworkers, the more understanding they will be. It is important to remember that you ARE NOT at fault.

Trying to adhere to a specific dress code is not always possible for HS sufferers. Certain fabrics,colors, and pieces of clothing can make or break a shift at work. Here again, communication is going to be your best friend. Dress codes are covered by the Americans with Disabilities Act (ADA), and as such, modifications are legally required in most circumstances. A note from your health care provider will most likely be required, and it is important that you discuss with your employer what reasonable accommodations you need that will also fit in line with the company’s conduct rules. It is important to note that, ,If an individual with a disability cannot comply with a dress code that meets the ‘business necessity’ standard or is mandated by federal law, even with a reasonable accommodation, he will not be considered ‘qualified.’ (The significance, n.d.) (Example, wearing a hard hat at a construction zone).

These same rules apply to your work environment. A more comfortable chair, a standing desk, extra break times, a fan, and flexible hours are just some of the ideas you can discuss with your employer.

For many of us, being able to work outside the home is crucial to our wellbeing. Yet it can feel overwhelming trying to navigate a job with HS, which for many people is a disability. As such, it is important to be aware of your legal rights as an employee. Federal and state laws such as the ADA, Family and Medical Leave Act (FMLA), and Civil Liberties Act are all in place to help protect you. Know your limits, understand your employers’ policies, work toward creative solutions, and, most importantly, talk to your coworkers and management team. Remember, you are your best advocate.

Resources

III. What is a Community Advocate and a Patient Advocate? by Denise Fixsen

It’s important to know the difference.

A community advocate differs from a patient advocate. An HS community advocate advocates publicly on behalf of HS; a patient advocate supports and advocates for someone with HS. You can be either kind of advocate for HS, or both, if you desire.

An HS community advocate:

• Ensures factual information is being provided to the community and clinicians

We post information daily and under relevant social media posts only: our articles, research, Dermatology list, etc. We also have a clinician section for those not educated in hidradenitis suppurativa, or maybe do not know all the resources available to them.

• Breaks stigmas

This is our biggest challenge, and one we must work on diligently. An example of this work is informing people that HS is not a gland illness, or infection of the glands. This stigma set us back decades, and continues to persuade the medical field to say you do not have hidradenitis suppurativa, because your abscesses or nodules are not in the right location. Breaking the stigmas—and there are many—is one of the most important things we can do as Community advocates.

• Raises true awareness

This goes with all of the above. However, we go above and beyond with special projects, such as our professional made awareness video, talent section on our website, our tattoo section, warriors sharing their stories, and, of course, on Awareness Week we make a lot of noise.

• Obtains and shares reliable information and resources for the community

All of this can be found on our website. We have an HS research section and HS physician article section. All our written material is based on research and or collaboration with physicians, and, of course, informed by decades of experience, which includes attending several symposiums over the years. We also share information from the HS foundation. We screen everything before we share it. Anything but Google.

So those with the illness know and have reliable information. And it is our duty to promote true HS awareness.

Important:

When sharing written information with the HS community, stay mindful and ensure that the information you are providing is valuable, factual, reliable, and from reputable sources.

Patient Advocates – In person or online is more of a hands-on approach

We help those unable to advocate for themselves, or who may feel lost amid all the information; we can help navigate the system, and help those in need to ensure they understand their options. A patient advocate is someone who is “by their side” (in person or virtually) to ask healthcare providers or healthcare payors (such as insurance companies and or federal/state health programs) the right questions on their behalf, to ensure the patient understands the options, and, in many cases, make sure things happen.

Patient advocates may help with:

• Doctor appointments. Finding patients a doctor or going with them during a visit; calling around or emailing finding the right physician
that specializes in hidradenitis; going with them on their visit as their advocate; making sure they understood with the doctor was explaining; making sure everything was taken care of, their needs were met, and their questions were answered.

• Hospital visits/stays. If someone isn’t getting the care they need or deserve, this would be exactly what a patient advocate of the hospital would do: making sure the person you are advocating for is being taken care of is being heard and their needs are being met. If not, it is the Patient Advocate’s responsibility to speak to the charging nurse, management, etc.

• Surgeries. If they are not being heard or not understanding the process, being their Advocate and speaking on behalf, if necessary. Explaining to a surgeon what the patient is asking for and why. Making sure they are being heard when they don’t have a voice.

• Procedures. Making sure the patient and even the medical professionals know all the options. This is where reliable resources are crucial. Once they know all the options, they can discuss the best plan of action.

• Insurance companies. Help get things covered if they are being denied for things they need. This can be quite a process. The Advocate would have to know what information to provide both to the physician and the insurance company. This also requires you to work with the prescribing provider to ensure they are writing the letter properly able to appeal to, and even work on, outside insurance appeals.

• Medical bills. Assisting with setting up payment plans or help lower overall costs; working closely with the person you are advocating for; teaching them how to call around to set up payment plans, if they qualify; finding them a charity organization that might be able to help them pay bills.

To be a community or patient advocate takes desire, dedication, and passion. Most importantly, you must fully be educated on the illness. This also includes educating others. Patient Advocacy requires being able to communicate with clinicians, researchers, multiple personality types, and navigate challenging situations. As a patient advocate, there will often be times that you deal with people in desperate situations, which require the ability to listen, help formulate a plan, and follow through on commitments made to others. Being an advocate, especially a patient advocate, is not for everyone.

In most cases, a community advocate doesn’t need to be as personally involved to extend their knowledge and understanding on social media or in support groups. Sometimes it’s about letting others know you understand and that they’re not alone, and just offering reliable information, resources, and opinions.

If possible, please share your personal experiences and journey of being a successful community advocate.

My own journey as an HS AdvocateI have been an HS patient advocate for nearly three decades. I have worked with hundreds of hidradenitis patients and clinicians over the years. Due to several other illnesses, and being bed-bound, I have been doing everything from home, and due to the HIPAA laws, it has become trickier to help others. I have been a community advocate since the days of Yahoo support groups, in 2001.

As of March 2022, I have officially decided to concentrate on our organization, mentor community advocates and retire from patient advocacy altogether. Around 2017, I met the other co-founder of HS Connect, Brindley Brooks, and both of us had a passion to create a safe place where everybody could go for reliable and, most importantly, accurate hidradenitis suppurativa information and resources.

We started the process in 2018 and launched our website in 2019. In 2021, we officially became a 501c 3 (nonprofit organization). We have grown and blossomed into something beyond our dreams. We are averaging 8,000 visitors a month and roughly 10,000 visitors from HS support groups. Our support group is quickly reaching 10k members. And we’re continuously growing. We’re helping so many that suffer and getting the opportunity to work with amazing organizations, foundations, and HS medical professionals.

Resources

• https://www.hsconnect.org/post/patientadvocate

IV. How to Be an HS Community Advocate by Donna Atherton

Let me begin by sharing the reason for creating the International Association of Hidradenitis Suppurativa Network (IAHSN). At an annual physical, my primary care physician (PCP) and I discussed my ongoing problem with Hidradenitis Suppurativa (HS). My PCP handed me a list of foods (nightshades, sugar, bread) to avoid eating. The list was to help reduce inflammation and flares. I looked at the list and replied, “I can’t eat anything! What can I eat?” She laughed! I drove home thinking about the long list of foods to avoid, against the echoing memory of her laughter.

So when I got home, I created IAHSN on Facebook and Twitter: a place to share information to help others with HS. On that day, I made a commitment to advocate for hundreds, thousands, or even millions of people living with HS. So let me share a few skills that I have learned over the years as a HS advocate. This section will guide you as a new HS community advocate. By using these skills, you can achieve success.

Each action builds on the previous skill, and it is up to you how you take action. Such actions will motivate your growth as an HS community advocate. You will build confidence, knowledge, and skills as a community advocate.

Let’s start with a personal story. Your story should project powerful images that influence the listener. You must speak with power about an issue that will move the listener. You want them to become engaged in your story.

Write a letter and send it to your elected officials. In a few days, follow up with a telephone call. This action is not difficult. Educate officials about what is happening in their district or state. Introduce yourself and share your passion for the issue. This action allows decision-makers to know how best to represent you. In your letter, include your contact information and request a response. Schedule a yearly, in-person meeting with your Senator or their aid. You will be able to discuss your HS advocacy work throughout the year. Don’t forget to leave your pamphlets, brochures, flyers, and business cards.

Promote HS Awareness Week and send a letter to your State’s Governor. Request, in writing, a Proclamation signed by your Governor. This action acknowledges HS Awareness Week in June. Then host or participate in events promoting HS Awareness.

Let people know about HS by hosting a table at an event. This is a great way for community members to get information. Present at a local event or the Chamber of Commerce in your area. This will alert others in the community of your advocacy work. Promote ways of becoming involved as a volunteer, such as health fairs, expos, walkathons, trade shows, and conferences. These are great venues to host a table.

If you feel adventurous, host a walkathon, bike a-thon, or jog-a-thon. A walkathon brings the community together and promotes awareness in a fun environment.

Fundraising is another way to promote HS community advocacy. You can host a community event. Host a small event and invite family and friends. As the host, provide some light food and drinks. This is a great way to share your successful work in a relaxed setting. Parties can include guest speakers, short videos, or presentations. Hosting a party can highlight the importance of investing in your work to your guests.

At the end of the evening, request a contribution. This allows you to continue your work as an HS community advocate. Another option is to donate the funds to HS nonprofit associations. Lastly, collaborate with other advocates or associations. It’s just that easy!

Resources

• https://www.verywellhealth.com/ how-to-become-a-patient-advocate-or navigator-2614922