Having your child deal with a skin condition that turns out to be a rare disease can be a scary experience. A diagnosis of scleroderma can feel scary to most parents and discomfort, potential for additional complications, and uncertainty can be a source of stress and anxiety.
Fortunately, while scleroderma is a rare condition that currently does not have a cure, it is also a manageable one.
Parents and Caregivers by equipping and educating yourself with information about this disease, the most effective treatments and care options, you can set your child and family up for success. The following practical and informative overview can help you be more engaged as you work with your doctor and broader treatment to develop a care plan that is right for your little one’s needs.
What is scleroderma?
The term scleroderma actually describes a cluster of relatively rare conditions related to the hardening and tightening of the skin. Another term for this condition is systemic sclerosis. According to the National Scleroderma Foundation, approximately 300,000 Americans live with some form of scleroderma.
There are two primary types of scleroderma, localized scleroderma and systemic scleroderma. While localized scleroderma only affects the skin, systemic scleroderma can affect blood vessels, internal organs, and the digestive system.
Although both types can develop in children, localized scleroderma is the more common form diagnosed in younger patients. Overall, approximately 5,000 to 7,000 children in the United States are affected by the condition. There is currently no cure for scleroderma, but there are effective treatments that can help slow down the progression of the condition, ease symptoms, and improve quality of life.
The primary cause of scleroderma is believed to be a dysfunction in the immune system that causes the overproduction of collagen. While collagen is required for healthy, elastic skin, too much of it can result in a hardening and tightening of the skin similar to the scarring process.
Scleroderma Risk Factors
Risk factors associated with an increased chance of developing this condition can include:
Genetics and family history
Immune system-related complications
When it develops in children, the earliest signs of localized scleroderma are patches of discolored skin. These areas will often progress into hardened or waxy patches with a blue or white discoloration. The symptoms often vary on a case-by-case basis, but commonly reported signs of scleroderma can include:
Small red spots on the hands and face
Hard, overly tight skin, usually first developing in the face, hands, and feet before spreading to other areas
Swelling and itchiness
In cases of systemic scleroderma, children can experience Raynaud’s phenomenon, which causes contraction of blood vessels resulting in abnormal sensitivity to cold, and discoloration in the extremities
Digestive issues in some cases
Complications can include heart and lung problems, joint problems, and ongoing skin problems. The goal of treatment is to improve these symptoms and lower the risk of serious long-term complications.
Because of the rarity, range of forms, and varieties of scleroderma in children, there can be challenges in diagnosing this condition. Generally, doctors can perform a physical examination and blood tests to check for certain antibodies. Organ function testing may also be helpful to determine if the condition is localized or systemic.
Diagnosis very often requires the assistance of a specialist, such as a pediatric rheumatologist.
Upon diagnosis, commonly recommended treatment options can include:
Immunosuppressants to reduce the progression of skin problems such as thickening
Medications to prevent infection, reduce blood pressure, and address digestive issues
Pain relievers and anti-inflammatory drugs
Physical therapy to help maintain and develop strength and functioning
Stem cell therapy, if symptoms have not responded to other treatments
In some cases, surgery may be needed to address organ complications
Caring for a Child with Scleroderma
Children can encounter a wide range of care needs, from medication to nutrition to appointments, that families find they need assistance with. In these situations, families can turn to the help of pediatric home health professionals. For a wide range of conditions and diagnoses, including scleroderma, pediatric home health services can help families maintain a healthy life balance while still ensuring the level of care their children deserve.
Contact Care Options for Kids for Home Health Care in Florida
It can be hard to balance your time between work, home, and caring for a child. That’s why our team of professionals at Care Options for Kids is here to help. We have been enforcing precautionary measures and following the Centers For Disease Control (CDC) guidelines for COVID-19 to ensure the safety and health of our clients and employees.
Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.
If you or a loved one are considering Pediatric Home Health Care Services in Florida, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.