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Chronic graft-versus-host disease (cGVHD) is a complex condition that may affect many different parts of your body

To help your healthcare team manage your cGVHD, track your symptoms between appointments.

Chronic GVHD is a serious and common complication of allo-HCT, which are blood stem cell transplants used to treat many types of blood cancer and other conditions.

Some cases of cGVHD are mild, while others are moderate or severe. Chronic GVHD is considered more severe if there are more organs involved (for example, lungs, skin, and nails) or if the symptoms in any one organ are particularly severe. Your healthcare team will use a scoring system to assess the severity of your cGVHD is – you can help them by tracking your symptoms.

Many symptoms of cGVHD are caused by inflammation and fibrosis. Chronic inflammation damages tissues, which are then repaired by the body creating new connective tissue. When this damage-and-repair cycle happens too often, there is too much connective tissue, and permanent scarring can destroy normal tissue.

Know your symptoms

These are some of the most common symptoms of cGVHD:

 

Eyes

Dryness, grittiness, pain

Lungs

Shortness of breath, dry cough 

Skin

Thickened or tight skin, with changes in texture or colour

Genitals

Painful rash, dry skin

Mouth

Appearance of lacy white lines, painful ulcers

Muscles & Joints

Stiffness, pain

Digestive System

Pain, difficulty swallowing

 

If you notice any of the signs or symptoms listed after receiving an allo-HCT, speak with your healthcare team immediately.

 

 

Ease your symptoms

Here are some tips and tricks to manage your chronic GVHD:

Eyes

  • Keep eyes moist with preservative-free artificial tears
  • Keep your eyes moist while you sleep by using an eye gel or ointment
  • Stay out of wind, air conditioning, and dry environments 

Lungs

To lower your risk of lung infections:

  • Wash your hands often
  • Avoid sick people
  • Get vaccines recommended by your doctor
  • Avoid yard work or exposure to dirt, soil, or plants 

Skin

  • Apply fragrance-free ointments or creams right after you shower or bathe
  • Protect your skin from sun exposure by wearing a hat, long sleeves, and pants and using sunscreen
  • If skin or tissues are tight, gentle stretching, massage, or physical therapy may help loosen thickened or hardened skin 

Genitals

To minimize irritation and pain:

  • Wash your genital area with warm water and soap 
  • Don’t use perfumed products in the genital area
  • Wear loose cotton or cotton-lined underwear
  • Use a water- or silicone-based lubricator before sex 

Mouth

  • Drink water often to keep your mouth moist
  • If you have difficulty swallowing, take small bites and chew food completely
  • Keep teeth clean (brush twice daily, floss once daily) and visit a dentist regularly 

Muscles & Joints

  • Ask your doctor if seeing a physical therapist could help
  • Avoid positions that decrease blood flow to your legs (for example, crossing your legs or sitting for a long time) 

Digestive System

  • Keep a list of what you eat and symptoms
  • Spicy, oily, or fatty foods and dairy products are more likely to cause problems 
  • See a dietitian if you’re losing weight 

Track your symptoms

Download the symptom tracker to monitor changes in your symptoms or to identify new symptoms.

Learn about cGVHD

What is cGVHD?

Blood stem cell transplants are used to treat many types of blood cancer and other conditions. The transplanted cells may come from your own body (autologous hematopoietic cell transplant, or auto-HCT), or they may be healthy cells from a donor with a similar genetic makeup (allogeneic HCT, or allo-HCT). 

The transplant contains immune cells, which are important for keeping you healthy and fighting infection. However, immune cells from another person (the graft) can sometimes attack your own body (the host) because they see it as foreign and a threat. 

Graft immune cells attacking normal host organs and tissues is called GVHD. GVHD may be classified as acute or chronic, based on timing and clinical presentation. Chronic GVHD is a serious condition that can result in permanent damage to your body, disability, or death. Appropriate and timely treatment may help people with chronic GVHD maintain their quality of life.

Who is affected by cGVHD?

Chronic GVHD is a serious and common complication of allo-HCT. It occurs in 30–70% of people who receive an allo-HCT. 

There are some factors that may put you at higher risk of developing cGVHD after allo-HCT.

These include: 

  • Incomplete genetic match. A donor’s cells may not be a perfect genetic match, which may make the donor immune cells more likely to attack your own organs. 

  • Older recipient age. 

  • History of acute GVHD.

  • Male recipient of female donor cells. 

  • Use of post-transplantation donor lymphocyte infusion.

  • Use of peripheral blood cells. 

Before receiving an allo-HCT, the healthcare team will take measures to try to prevent chronic GVHD. They will ensure the donor is as close a genetic match as possible. 

How could chronic GVHD affect my life?

Chronic GVHD is a very serious complication. It can affect your ability to carry out everyday tasks and activities and may even lead to death. If you have cGVHD, you may experience limitations on what you can do in your everyday life. People with cGVHD are less likely to be fully active in school, work, or home activities. In particular, fibrosis can affect your joints, lungs, liver, and skin, which may limit your ability to do your regular activities.

Going through a blood stem cell transplant and chronic illness is difficult. Many people who receive HCT also experience depression or anxiety. Talk to your doctor about your next steps with cGVHD.

For more information about cGVHD diagnosis, symptoms, treatment options, and support resources, please download the cGVHD brochure.

To help your healthcare team manage your cGVHD, track your symptoms between appointments.