Sometimes, graft-versus-host disease (GVHD) affects the skin, making it either overly thin and delicate or hard and thick. When the skin becomes thick and stiff, it’s called sclerotic skin GVHD. This condition can cause tightness and discomfort, which may make daily activities more difficult.

In severe cases, sclerotic GVHD can limit movement and lead to complications like open sores. Understanding why this happens and how it’s treated can help you manage symptoms and protect your quality of life.

How Does Sclerotic GVHD Happen?

GVHD affects some people who undergo a bone marrow transplant using cells from a donor. In cutaneous (skin) GVHD, the donor cells — known as the graft — mistakenly attack healthy skin cells in the recipient, or host. GVHD can also affect other organs, such as the gastrointestinal tract and lungs. All forms of GVHD are caused by a reaction of the immune system — instead of protecting the body, the immune response causes inflammation and tissue damage.

Sclerotic graft-versus-host disease is a type of chronic GVHD, meaning it develops over time rather than appearing in the first 100 days after a transplant, which is the typical onset of acute GVHD. Sclerotic GVHD leads to skin hardening and thickening — a process known as sclerosis, which is also a key feature of scar tissue.

Risk Factors for Sclerotic GVHD

Some research suggests that sclerotic GVHD affects 15 percent to 20 percent of people with chronic GVHD. However, in one large study focusing on severe chronic GVHD, the rate was as high as 53 percent.

Sclerotic GVHD is more common in people who have had chronic GVHD for a while. On average, studies suggest the condition may develop around 15 to 16 months after a chronic GVHD diagnosis, though timing can vary.

The risk of sclerotic GVHD increases if the stem cell or bone marrow transplant was done without first removing certain immune cells called T cells. However, anyone who has received a transplant should be aware of this potential complication. Telling your healthcare provider about any skin changes as soon as possible may help diagnose sclerotic GVHD early and prevent severe symptoms.

Symptoms and Complications of Sclerotic GVHD

Sclerotic GVHD can affect any area of the body but most often develops on the arms, legs, lower back, and lower abdomen. Many people describe their skin as feeling tight, itchy, or like a severe sunburn. The skin may also feel rough and rigid (like wood), scaly, or bumpy. Some people experience color changes, with areas that appear darker, whiter, reddish, or purple. However, not all GVHD-related rashes are sclerotic — some milder rashes and skin symptoms may be due to other forms of cutaneous GVHD.

Although research suggests that sclerotic GVHD doesn’t necessarily reduce overall transplant survival rates, it can still have a major impact on quality of life by increasing compilations and limiting mobility. People with sclerotic GVHD are more prone to infections, and their skin may take longer to heal, increasing the risk of painful open sores, especially on the legs.

Sclerotic GVHD can also affect the mouth and, in severe cases, may restrict speech, tongue movement, chewing, and swallowing. These complications can interfere with nutrition, social interactions, and overall health. Swallowing difficulties also increase the risk of choking or aspiration (when food or liquid accidentally enters the lungs).

In some cases, the condition extends beyond the skin’s surface, affecting deeper tissues and making daily activities harder. When sclerotic GVHD involves the elbows, shoulders, or wrists, it can limit movement and flexibility. If it develops on the abdomen, it may make breathing and eating more difficult.

Good Skin Care Habits for Managing Sclerotic GVHD

Skin affected by sclerotic GVHD requires gentle, consistent care. Even with treatment, sclerotic GVHD in the skin or deeper tissues may be permanent. Keeping the skin clean and well moisturized helps prevent cracked skin, which is more vulnerable to infection. Moisturizers can also soothe your skin, making it feel less tight and improving flexibility. For the best results, apply moisturizer while the skin is still damp after showering to help lock in the hydration.

Before moisturizing, it’s important to wash your hands carefully to avoid spreading bacteria to sensitive areas of skin. Taking short showers and using lukewarm water instead of hot water can help reduce skin dryness. People with sclerotic GVHD should avoid using harsh cleansers, including exfoliants and antibacterial soap, which can further irritate the skin. In severe cases, a dermatologist (a medical doctor who specializes in treating the skin, hair, and nails) may recommend avoiding soap altogether. Talk to your dermatology provider about the best skin care routine for you.

Protecting the skin from ultraviolet (UV) light is also essential. Wearing sunscreen and protective clothing during the day can help reduce symptoms and lower the risk of skin cancer. Additionally, avoiding scratching sensitive skin areas can help prevent irritation and infections.

Medical Treatment for Sclerotic GVHD

The treatment for sclerotic GVHD depends on its severity. Your dermatologist may recommend topical medications that you apply to the skin to help lower inflammation and ease discomfort. For more widespread or severe cases, systemic immunosuppressants — taken by mouth or injection — are often prescribed to regulate immune activity and slow disease progression. These medications can help prevent further thickening and complications.

If skin itching is bothersome, your healthcare provider may suggest using moisturizers for hydration and applying anti-inflammatory creams, such as corticosteroids, to reduce symptoms. Your provider may also suggest taking antihistamines, though these drugs may offer only limited relief.

Another treatment option is extracorporeal photopheresis (ECP), a type of light therapy. During ECP, blood is drawn from the body and mixed with a photosensitizing agent (a chemical that makes the blood cells more sensitive to light). The treated blood is then exposed to UV light and returned to the body. ECP helps reduce the immune activity that causes GVHD. Most people tolerate the treatment well and experience few side effects.

Communicate With Your Doctor

If you have sclerotic GVHD, staying in touch with your healthcare team is essential. Regular checkups with your dermatologist or transplant specialist can help track changes in your skin and adjust treatments as needed. If you notice new or worsening symptoms, let your doctor know as soon as possible. Early intervention can help prevent complications and improve your quality of life.

Talk With Others Who Understand

On myGVHDteam, the site for people with graft-versus-host disease and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with this condition.

Do you have sclerotic GVHD? Has it affected your range of motion or ability to do daily tasks? If so, what interventions has the dermatologist tried? Share your experience in the comments below.