Cutis laxa is an extremely rare connective tissue disease that is inherited or acquired. Acquired cutis laxa, also called generalized acquired elastolysis, is the disease covered in this document. This form of the disease is not inherited and comes in two variations either as a widespread insidious form which is Type 1 or a form associated with prior inflammation which is considered Type 2. The disease can be symmetric meaning that it appears equally on both sides of the body or asymmetric meaning that the disease has a different pattern on each side of the body.

A dermatologist, who is a doctor specializing in skin, can diagnose the disease and can assist with on-going care of the skin. If diagnosed with acquired cutis laxa, an internist is also required to track potential internal issues caused by the disease. An internist, who is a diagnostic doctor that deals with adult diseases, provides the patient's overall health picture to specialists who also might be necessary, such as a cardiologist for the heart, a pulmonologist for the lungs, and a hematologist/oncologist for the blood. It is imperative that your internist has a close working relationship with each specialist.

Medical schools are often a good option when caring for acquired cutis laxa patients since their operations are integrated and collaborative. Several medical schools that have treated Acquired Cutis Laxa patients include the following: University of Pittsburgh Medical Center (Pittsburgh, PA), Washington University Medical Center (St. Louis, MO), Mayo Clinic (Rochester, MN), Johns Hopkins Medical Center (Baltimore, MD), and University of Texas Southwestern Medical Center (Dallas, TX).

People with the disease typically have a very aged appearance when they are in their 20s to 50s. The skin normally has fine wrinkles, is loose, has a tendency to fold, and is very silky to the touch. The wrinkling can occur from the head to the feet and can be prevalent in the areas where sun damage does not typically occur, such as the groin, back, and torso.

• Inflammatory skin diseases such as urticaria, eczema, granulomatous dermatitis, papular erythema
• Systemic lupus
• Rheumatoid arthritis
• Several hematologic diseases including multiple myeloma, cutaneous B-cell lymphoma, angiocentric T-cell lymphoma, plasma cell dyscrasia, and systemic amyloidosis
• Diverticula of the gastrointestinal tract and bladder
• Rectal and/or vaginal prolapse
• Pulmonary manifestations such as emphysema and pulmonary fibrosis
• Hiatal hernias
• Congestive heart failure
• Aortic aneurysms
• Celiac disease

There is no treatment for acquired cutis laxa. Plastic surgery can be performed to alleviate some of the wrinkling. However with acquired cutis laxa, the results of the surgery may not last for an extended period of time. A dermatologist in coordination with a plastic surgeon can tell you if you are a good candidate for plastic surgery.

First of all, do not panic. It is a disease that can be managed. However it is essential that you locate a dermatologist who has worked with cutis laxa patients to ensure you are getting the best care. Most importantly, you should surround yourself with family and friends who can support you after diagnosis. Always remember that you are not alone, and the Cutis Laxa Internationale Support Group is here to help (Please see below for more information).

Currently there is a geneticist in the United States, Dr. Zsolt Urban at the University of Pittsburgh, who has been actively researching Cutis Laxa for over 10 years. You can find out more information about Dr. Urban by clicking here.

You may also email the Cutis Laxa Research Study coordinators, to obtain more information on acquired cutis laxa or to inquire about enrolling in their research study.

Yes, Cutis Laxa Internationale is a support group based in Saint-Cergues, France. People from all over the world are a part of this group. It consists of people who have the acquired and inherited forms of the disease.

For more information about Cutis Laxa Internationale you can visit their home page:

• English
• Français
• Español

*The above brochure has been reproduced on this website with permission from the author, Leann Harlow.