Scleroderma in Children

            If your child has recently been diagnosed with scleroderma or juvenile scleroderma, you have probably been searching the internet for information pertaining to it. You have a multitude of questions about this disease and this information is this article is geared towards helping you accomplish just that.

         There are two forms of scleroderma: localized and systemic. Children are more likely to be diagnosed with localized scleroderma rather than systemic. Systemic scleroderma occurs more in women between the age of 20 and 50 but if your child has this illness it is extremely rare. Localized is less severe because it does not cause damage to your child’s internal organs like systemic. Systemic scleroderma is a chronic, degenerative disease that involves the skin, joints, and internal organs. In many instances, the first symptom that occurs is the Raynaud phenomenon. The following is a link to a brochure for juvenile scleroderma:

         After being diagnosed, children attempt to come to terms with what having this disease means to them. It is important to help the child understand the disease and what will be happening to them. Also, you should help the child to come up with simple explanation for any visible discrepancies on their skin. This will keep the child from having to struggle to find some explanation or from being embarrassed about the situation. You should encourage children to continue to socially interact with theirs peers.

Connecting with Others: Additional Resources

The following is a link to read other children’s stories to let your child see that they are not alone.

.Would you like to connect with other parents and ask questions about scleroderma? There is an online community called “Inspire” offered through the Scleroderma Foundation that allows you to communicate with other parents.

Oral Health Issues in Scleroderma

Dr. Martin Hogan will be presenting on the topic of oral health care at the annual Patient Education Conference on Saturday, April 18, 2015 in Naperville, Illinois.

For more information visit the Scleroderma Foundation’s event page here or email to register for the event.

Those diagnosed with Scleroderma are more likely to experience challenges in maintaining their oral health not only due to the many related physical symptoms, but also because of difficulties with hand movements that can impair activities like brushing and flossing. Conditions associated with Scleroderma can sometimes make dental appointments more difficult as well. Fortunately there are many treatments available to address oral health concerns.

Microstomia and Tightness of the Mucosa (lining of the mouth)

Systemic Scleroderma can cause the mouth area to shrink and harden. The resulting limited mouth opening can create difficulties with speech, eating, and dental care. Activities such as brushing teeth, flossing, and dental procedures may become difficult to perform.

The tightening of the mucosa in the mouth can cause the gums to be pulled away from the teeth as well.

Treatment: There are several exercises that may be helpful in improving the flexibility of the lips and jaw muscles. Periodontal surgical options exist to improve mobility of the tongue and cheeks. There have recently been several newer treatments developed as well, including phototherapy to improve skin elasticity as well as surgical correction for microstomia.

Xerostomia (Dry mouth)

For Scleroderma patients, dry mouth may be caused as a side effect of some medications, such as antidepressants and antihypertensives. Xerostomia is also especially common in those with secondary Sjogren’s syndrome.

Dry mouth and soreness of the oral mucosa is common, and additional complications related to Xerostomia include tooth decay, gum inflammation, and potentially fungal infections such as thrush.

Treatment: It is important for patients to avoid substances that can worsen oral dryness such as alcohol and cigarettes. Sugary drinks should be avoided, as excessive consumption can increase the risk of tooth decay and erosion of the outer surface of the teeth.

Simple steps to alleviate dry mouth include drinking plenty of water, utilizing prescription fluoride toothpaste, and making sure to thoroughly brush teeth at least twice daily. Additional treatment options include medications that are designed to increase saliva production, and using a calcium paste for nighttime oral care.


The tightening of the skin on the hands and fingers experienced by Scleroderma patients can interfere with the ability to perform many daily activities, including oral care. Changes in the skin can make holding a toothbrush and flossing difficult.

Treatment: The use of adaptive devices or the use of an electric toothbrush may be helpful for those with limited dexterity. Extended-handle brushes can be especially effective for patients who experience difficulty raising their arms. You may also want to consider using a Waterpik Flosser if flossing has become challenging for you.

Dysgeusia (Changes in taste)

Dysgeusia, or changes in taste sensation, can occur with Scleroderma and as a side effect of some medications. Since taste and appetite are related, dysgeusia can cause a decrease in appetite and subsequent weight loss for some.

Treatment: When indicated and advised by your physician, changing medications can often alleviate alterations in taste sensation. Treatment of other conditions that you may be experiencing, such as xerostomia (dry mouth) can be helpful in improving taste sensation as well.


Myofacial Pain and Temporomandibular (jaw joint or TMJ) Pain

The TMJ joint is located in front of ear each, and pain associated with this joint is not uncommon among those with Scleroderma. Symptoms of TMJ can include ringing in the ears (known as tinnitus), muscle spasms in the jaw, and earache. Associated pain may be mistaken by some as tooth pain and can impair an individual’s ability to chew food, causing sensitivity in the jaw and face.

Treatment: Your doctor can prescribe medications and suggest additional treatments that are specific to your own symptoms, but generally over the counter pain relievers such as ibuprofen can be helpful in reducing TMJ related pain. Eating soft foods, performing facial exercises, and avoiding extreme jaw movements as much as possible can be beneficial as well.

Gastroesophageal Reflux Disease (GERD or acid reflux)

Gastroesophageal Reflux Disease can cause acid from the stomach to come back up into the esophagus and into the mouth. One of the most severe risks associated with GERD is tooth erosion that can occur due to repeated contact of acid onto the teeth. Additionally, some medications that are prescribed to treat GERD symptoms can exacerbate dryness of the mouth, which is a risk factor for increased dental plaque.

Treatment: Many of those diagnosed with GERD suck on lozenges or candies to lessen burning feelings that they may be experiencing, which can be helpful in stimulating saliva production and easing symptoms of dry mouth as well. However this should be done with caution because of the high sugar content in many mints and candies that can contribute to tooth decay.

Treatments to ease symptoms of GERD often include implementing changes to your diet by avoiding foods that you notice cause an increase in unpleasant symptoms. Many people choose to eliminate spicy foods and alcohol along with seeing their physician for an antacid medication.


Depression and other emotional aspects of Scleroderma can make activities of daily living more difficult because you may not have the energy or desire to complete tasks such as those related to oral care like regular brushing, flossing, or attending scheduled dental appointments.

Treatment: It is important to address any mental health issues related to your Scleroderma diagnosis that you might be facing. Your primary care doctor can refer you to a psychologist or counselor who can help you to better understand and manage your emotions. If you have been experiencing negative side effects from medications that you have been prescribed you should discuss this with your doctor as well, so that they can adjust dosages or find alternate medications.