Gorham-Stout disease, better known simply as Gorham’s disease, is a rare but serious medical condition that affects the bones via the lymphatic system. Essentially, people with Gorham’s disease have an overactive lymphatic system where excess lymph and white blood cells get delivered to certain bones throughout the body.
When this happens, the surplus of white blood cells disrupts the natural growth of bones, resulting in bone loss. As a result, Gorham’s disease is also known as Vanishing Bone Syndrome because the bone can completely disappear and be replaced by lymph vessels.
Because of how serious Gorham’s disease is, it is essential to receive an early diagnosis so that you can start treatment. Otherwise, serious cases of Gorham’s disease can cause bone loss in many bones throughout the body, including the ribs, vertebrae, skull, collarbone, and many others. Here are some of the treatments your doctor may recommend to combat Gorham’s disease.
While Gorham’s disease can be very serious, this is not always the case. In some instances, the lymph vessels deliver too many white blood cells to bones, but not enough to cause serious bone loss. Therefore, if you get diagnosed with Gorham-Stout, but are not yet showing symptoms, your doctor may recommend holding off on treatment. Instead, they will monitor the progress of the disease and start treatment if your bones start to be affected.
If your Gorham’s disease starts impacting the bones, medications are usually the first course of treatment. Currently, there are three different types of medications available for people with Gorham’s disease.
Anti-vascular medications, also referred to as bisphosphonates, are drugs specifically designed to combat osteoporosis, aka bone loss. Bisphosphonates, such as alendronate and risedronate, are used to slow the progression of bone loss and can stabilize Gorham’s disease if the treatment is started early enough.
Gorham’s disease is caused by an overactive immune system, resulting in a surplus of white blood cells. To slow down your immune system and stabilize the production of lymph, you may need immunosuppressants, such as rapamycin.
Anti-resorption medications are drugs that get into your system and prevent bone resorption, which is what happens when the white blood cells break down your bones. Alpha 2-b interferon is currently the main drug used for these purposes.
While radiation therapy is not a first-line treatment for Gorham’s disease and cannot cure the disease, it is used to treat the side effects of Gorham’s. The excess lymph flow and reduced bone growth of Gorham’s often result in chronic pain and a buildup of fluid in the lungs. Radiation therapy is used to treat these side effects in people where preventative and stabilizing treatments prove ineffective.
If medications are not able to stabilize the disease and bone loss continues, you may require surgery. Surgery is performed to rebuild and repair sections of bones or entire bones that have been lost because of Gorham’s.
In addition to rebuilding lost bone, bone graft surgery can be performed to stimulate new bone growth. While no surgical options are ever a cure for Gorham’s disease, it can help you recover and live a normal life. However, surgery is most effective when you are taking medications to keep Gorham’s under control. Otherwise, your medical condition can undo all the good of surgery.
While Gorham’s disease is a frightening thought, it is a very rare condition. Additionally, medications are proving to be highly effective at controlling Gorham’s disease, and surgery can undo or repair any bone loss. However, it is essential that you receive an early diagnosis so that you can start a treatment plan as quickly as possible.