About your diagnosis
Start here, especially if you were recently diagnosed or referred to a specialist. These questions establish exactly what you are dealing with.
- What is my exact diagnosis — which 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 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 establish is whether your disease is currently active — the fire is burning — or inactive, where the fire has gone out and left damage behind. Treatment decisions follow from this.
- Is my morphea currently active, or has it burned out?
- How do you determine whether it is active or inactive?
- What signs suggest it is becoming more active?
- Is the current appearance damage from past activity, or still progressing?
- How quickly can morphea cause permanent damage if left untreated?
Contact your provider right away if you notice
- A new purple or red border appearing around an existing lesion
- A new area of hardening, tightening, or colour change
- Sudden loss of range of motion in a joint
Treatment
Not all morphea needs the same treatment. The right approach depends on your subtype, how active the disease is, how deep it goes, and where it is.
- 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 — stopping progression, or improving appearance?
- What are the risks and side effects of what you are recommending?
- How long will I need to be on treatment?
- How will we know if it is working?
- What happens if this treatment does not work?
- Are there clinical trials I should know about?
Monitoring and follow-up
Regular monitoring matters, particularly because morphea can reactivate after periods of inactivity. Knowing the follow-up plan lets you stay ahead of it.
- How often should I come in for follow-up visits?
- What tests or imaging do I need — MRI, bloodwork — and how often?
- Should I photograph 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 do I contact between appointments if something changes?
Specialist referrals
Depending on where your morphea is and how deep it goes, other specialists may need to be involved.
- Do I need a rheumatologist in addition to a dermatologist?
- Given where my morphea is, should I see an ophthalmologist? Especially for head or face involvement.
- Should I be evaluated by a dentist, orthodontist, or oral surgeon?
- Would physical or occupational therapy help with range of motion?
- Is there a reconstructive specialist I should see once my disease is inactive?
- Do you have a team here who work together on morphea cases?
Daily life and prognosis
It is entirely appropriate to ask 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 activities I should avoid — sun exposure, certain exercises, stress?
- Is there anything I can do at home that helps, such as moisturisers or stretching?
- Are there support groups or resources you recommend?
- Could this affect my ability to work, study, or do daily activities?
If your child has morphea
Children with morphea, especially linear morphea, have particular concerns around growth and development.
- Could this affect my child's bone or muscle growth?
- Should we be seeing a paediatric dermatologist or paediatric rheumatologist?
- How will this affect my child's development, physically and emotionally?
- Do we need to notify the school or any other providers?
- Is the treatment safe for a child? What side effects do we monitor for?
- How often should growth and development be checked?
- Are there resources specifically for children and families?
Before you leave
These four are worth asking at the end of every appointment, whatever else was discussed.
- What is my next step?
Leave with one clear action, even if it is only scheduling the follow-up.
- What should I watch for?
Know the specific signs that should prompt a call before your next scheduled visit.
- Who do I call if something changes?
Get the right number — not the main line, but whoever handles urgent morphea questions.
- Can I get a visit summary?
Request a written summary of what was discussed, your diagnosis, and the plan.
There are no wrong questions. The patients who do best come in prepared, advocate for themselves, and leave understanding what we are doing and why.
Heidi Jacobe, MD, MSCS — UT Southwestern Medical Center