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Are There Actual Specialists For HS? How Do You Find One? And If You Do, Have Folks Found It To Be Worth It?

A myHSteam Member asked a question 💭
Portland, OR

I’ve had a leaking spot that has tunneled for 2 months. I just finished a round of doxy that left me with another spot. So far it is not tunneling but both hurt now. I feel like the fact that my dermatologist has tried me on only one 2 week course of antibiotics and is now suggesting Humira or Cosentyx is kind of intense. I feel hopeless.

October 11
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A myHSteam Member

Yes, there are specialists for Hidradenitis Suppurativa (HS). Here’s how you can find one and why it might be worth it:

Finding an HS Specialist
1. Seek a Specialist: HS is a complex condition requiring specialized knowledge. If your dermatologist cannot provide a proper diagnosis or answer your questions, ask for a Show Full Answer

Yes, there are specialists for Hidradenitis Suppurativa (HS). Here’s how you can find one and why it might be worth it:

Finding an HS Specialist:
1. Seek a Specialist: HS is a complex condition requiring specialized knowledge. If your dermatologist cannot provide a proper diagnosis or answer your questions, ask for a referral to a board-certified physician specializing in complex medical dermatology.
2. Hidradenitis Suppurativa Foundation: They provide a list of HS Specialty Clinics across the U.S. that offer medical care for people with HS.
3. Telehealth Visits: If you can't find a specialist nearby or prefer not to visit in person, consider a virtual consult. Telehealth allows doctors to remotely examine, diagnose, and prescribe treatment for HS.

Why It Might Be Worth It:
- Expertise: Specialists in complex medical dermatology have the expertise to evaluate and treat difficult, rare, or complex skin diseases like HS.
- Comprehensive Care: They often collaborate with other specialists such as rheumatologists or gastroenterologists to provide comprehensive care.
- Personalized Treatment: They can offer a range of treatment options and tailor them to your specific needs, potentially improving your outcomes.

Your Current Situation:
- Pain and Tunneling: It's crucial to address the pain and tunneling you're experiencing. A specialist might offer more targeted treatments.
- Treatment Options: While antibiotics like doxycycline are common, treatments like Humira or Cosentyx can be considered for more severe cases. It's important to discuss all potential side effects and benefits with your doctor.

Tips:
- Be Honest About Symptoms: Clearly communicate your symptoms and concerns to your provider.
- Ask About Experience: Ensure your doctor has experience treating HS.
- Request Referrals: If your current dermatologist isn't meeting your needs, don't hesitate to ask for a referral to a specialist.

Remember, seeking specialized care can make a significant difference in managing HS effectively.

October 11

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