A definition of Juvenile Scleroderma in simple, easy to understand language
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Children with scleroderma: Treating and living with skin ulcers
Written by Thomas J.A. Lehman, Pediatric Rheumatologist

Chronic skin ulcers are one of the most discouraging problems for children with scleroderma.  They hurt at even the slightest touch and sometimes it seems nothing will get rid of them.  Fortunately, however, that’s not true.  Skin ulcers can be treated and with luck they can be gotten rid of.  Even if you can’t get rid of them completely there are a number of tricks for making the problem better.  The most important thing is to understand where they come from.

Skin ulcers most often appear over the knees or elbows, around the ankles, or on the tips of the fingers.  These areas all have several common attributes.  They are all places where the skin is relatively thin in that there isn’t a lot of tissue underneath it.  This means the blood supply is relatively poor (even though they certainly can bleed).  In addition they are areas that are frequently bumped or otherwise injured.  It is this combination of poor blood supply and repeated injury that leads to the development of ulcers.  In children with scleroderma we can directly attack both of those problems.

The poor blood supply to the skin is the direct result of the scleroderma itself.  Scleroderma damages the blood vessels and decreases blood flow.  To improve this we must treat the scleroderma.  I have had my best success in treating children with methotrexate.  This often results in dramatic softening of the skin and healing of the ulcers.  Methotrexate also has a direct anti-inflammatory effect which helps to control the ulcers.  In children with milder disease where methotrexate isn’t necessary blood flow to the skin can be improved by using drugs which open up the blood vessels.  These are the same drugs that we use for Raynaud’s.  Some doctors like nifedipine, others isradipine, and still others amlodipine. All of them work for some people and none works for everyone.  There are also many reports that pentoxifylline is effective (I like it, but not everyone agrees).  Newer reports suggest that sildenafil and agents like that may also work by increasing blood flow.  These medications all have to be prescribed by your physician and each may have side effects which you need to be aware of.

Medications to improve the blood supply are an important part of caring for skin ulcers, but they aren’t the whole answer.  Skin ulcers are poorly healing areas which have been injured.  If you can prevent the injury you can prevent the ulcers.  Unfortunately it only takes the tinniest of injury to start ulcers in some people.  Just the two ankles knocking into each other while walking might be enough.  If a child is ulcer prone everyone needs to take steps to minimize the trauma.  That means being careful of injuries to the fingers.  That may mean wearing elbow pads or knee pads.  It can mean wrapping the ankles with moleskin or other soft protective materials.  In addition it means that parents and children must be constantly vigilant for any areas of skin irritation or redness that suggest an area may break down. Careful preventive measures and steps to keep the skin soft and improve blood flow to the area may be enough to stop an ulcer from developing.  I have my patients use a lot of cocoa butter on dry cracked areas.  Gentle massage can keep the skin soft and improve blood flow preventing problems from getting worse.

    Once an ulcer is present all of the above steps to protect the area become even more important.  However ulcer’s need air to heal.  Don’t cover them with protective materials.  Anyone with an obvious skin ulcer needs to be under the care of an experienced physician who is paying careful attention.  Infected ulcers can be catastrophic.  Minor ulcers often respond to local measures.  Keep the area clean, dry and warm to improve blood flow.  Topical antibiotics may help, but different doctors have different ideas.  Avoid trauma to the area and avoid getting it wet unless it is being soaked in antibiotic containing solution.  There are a variety of prescription coverings that contain moisturizing agents and antibiotics, but you’ll need to get these from an experienced wound healing specialist.

The best answer.  Prevent the problem whenever possible.  Keep the disease under good control.  Watch vulnerable areas and take steps to protect them.  Respond immediately to any area that looks at risk.  Good luck!!

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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Updated May 14, 2008
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