"Write down your questions before every appointment. The best visit is one where you leave knowing your next step."
— Dr. Heidi Jacobe, UT Southwestern Medical CenterAbout Your Diagnosis
Start here — especially if you are newly diagnosed or recently referred to a specialist. These questions help you understand exactly what you are dealing with.
- What is my exact diagnosis — what type and subtype do I have?
- Is this morphea, scleroderma, or something else? What is the difference?
- How confident are you in this diagnosis? Was a biopsy done?
- Is this condition limited to my skin, or could it involve deeper tissue or organs?
- What caused this? Is there anything I did — or could have done — to prevent it?
- Is this hereditary? Should my family members be concerned?
Disease Activity
One of the most important things to understand is whether your disease is currently active (the fire is burning) or inactive (the fire has gone out, leaving damage behind). Treatment decisions depend on this.
- Is my morphea currently active, or has it burned out?
- How do you determine whether it is active or inactive?
- What signs should I watch for that suggest it is becoming more active?
- Is the current appearance damage from past activity, or is it still progressing?
- How quickly can morphea cause permanent damage if left untreated?
- A new purple or red border appearing around an existing lesion
- A new area of hardening, tightening, or color change
- Sudden loss of range of motion in a joint
Treatment
Not all morphea requires the same treatment. The right approach depends on your subtype, how active the disease is, how deep it goes, and where it is located.
- Do I need treatment right now, or is watchful waiting appropriate?
- What treatment are you recommending — and why this one for my case?
- What are the goals of treatment? Stopping progression? Improving appearance?
- What are the risks and side effects of the treatment you're recommending?
- How long will I need to be on treatment?
- How will we know if the treatment is working?
- What happens if this treatment doesn't work?
- Are there clinical trials I should know about?
Monitoring & Follow-Up
Regular monitoring is critical — especially because morphea can reactivate after periods of inactivity. Knowing your follow-up plan helps you stay proactive.
- How often should I come in for follow-up visits?
- What tests or imaging (MRI, bloodwork) do I need, and how often?
- Should I be photographing my lesions at home? How do I do that consistently?
- What would cause you to change my treatment plan?
- When would you consider tapering or stopping treatment?
- Who should I call or message between appointments if something changes?
Specialist Referrals
Depending on where your morphea is located and how deep it goes, you may need other specialists involved in your care.
- Do I need to see a rheumatologist in addition to a dermatologist?
- Given where my morphea is, should I see an ophthalmologist? (especially for head/face)
- Should I be evaluated by a dentist, orthodontist, or oral surgeon?
- Would physical or occupational therapy help with range of motion?
- Is there a plastic surgeon or reconstructive specialist I should see once my disease is inactive?
- Do you have a team here who works together on morphea cases?
Daily Life & Prognosis
It's completely appropriate to ask about what life looks like going forward — both practically and emotionally.
- What is the long-term outlook for my type of morphea?
- Can morphea go into remission on its own, or does it always need treatment?
- Will the skin changes I have now be permanent?
- Are there any activities I should avoid — sun exposure, certain exercises, stress?
- Is there anything I can do at home to help — moisturizers, stretching, etc.?
- Are there support groups or resources you recommend for patients and families?
- Could this affect my ability to work, go to school, or do daily activities?
If Your Child Has Morphea
Children with morphea — especially linear morphea — have unique concerns around growth and development. These questions are especially important for pediatric patients.
- Could this affect my child's bone or muscle growth?
- Should we be seeing a pediatric dermatologist or pediatric rheumatologist?
- How will this affect my child's development — physically and emotionally?
- Do we need to notify the school or any other providers about this condition?
- Is the treatment safe for a child? What do we monitor for side effects?
- How often should we have growth and development checked?
- Are there resources specifically for children and families dealing with morphea?
Before You Leave
These four questions are worth asking at the end of every single appointment — no matter what was discussed.
- Make sure you leave with one clear action item, even if it's just scheduling a follow-up.
- Know the specific signs that should prompt you to call before your next scheduled visit.
- Get the right number — not just the main line, but who to reach for urgent morphea questions.
- Request a written summary of what was discussed, your diagnosis, and your plan.
A note from Dr. Jacobe
"There are no wrong questions. The patients who do best are the ones who come in prepared, advocate for themselves, and leave with a clear understanding of what we're doing and why. Bring this list. Use it."
— Dr. Heidi Jacobe, Board-Certified Dermatologist & Professor, UT Southwestern Medical Center