Scleroderma Awareness Day – June 29th

Governor Kristi Noem has declared June 29th, Scleroderma Awareness Day in South Dakota in hopes of raising awareness for this rare autoimmune disease. South Dakotans are encouraged to wear teal on June 29th.

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The disease is often difficult to diagnose—and early diagnosis is critical to positive outcomes and better survival rates. 

Three and a half years ago I was diagnosed with systemic scleroderma. I am very fortunate that I was diagnosed very early, am able to be active, and I do not have any skin involvement yet.

The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease but does not always occur in the disease. Raynaud’s syndrome is one of the earliest symptoms. Raynaud’s syndrome causes the arteries to contract (particularly in the fingers and other extremities) leading to pale or blueish color in the fingers.

Systemic scleroderma also can cause arthritis, and problems with the body’s connective tissue. It also can affect the internal organs.

The symptoms of scleroderma vary greatly for each person, and the effects of scleroderma can range from very mild to life threatening. The seriousness will depend on the parts of the body, which are affected, and the extent to which they are affected. A mild case can become more serious if not properly treated.

A person with scleroderma may experience abrupt lifestyle changes. Stress management and staying active both can help reduce symptoms. Often a person looks fine on the outside but may be struggling with changes taking place inside their body.

When a person is suddenly affected by scleroderma, he or she may have difficulty navigating the stairs in a home. This can be difficult if a person has mobility issues and lives in a multi-level home.

A ranch style home is much more conducive for the long term. A split foyer can work if most of the daily living can be done on one of the levels. It can be particularly helpful to have laundry on the same floor to prevent the struggle of climbing or descending stairs while also carrying a load.

It’s good to explore other options in the home that can make things more convenient, such as having a garage that has easy access to the kitchen for transporting groceries.

It’s estimated that about 300,000 Americans have scleroderma. About one third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult. There may be many misdiagnosed or undiagnosed cases.

Actor Robin Williams noted in an interview in 2002, “You can make up a joke about almost anything,” says Williams. “But to tell you the truth, there isn’t even one tiny aspect of this disease which lends itself to humor. Scleroderma is a horrible disease…” (USA Today)

South Dakota has two scleroderma support groups—one in Rapid City and one in Sioux Falls. The support groups provide information on scleroderma and provide an opportunity to talk with other people impacted by the disease. The groups are supported by the Scleroderma Foundation.

If you have questions about the Black Hills Scleroderma Support Group, please call me, Ron Sasso at (605) 593-3759 or email me at ron.sasso1@gmail.com . If you need to find a home that better suits your changing lifestyle, please contact me as well. 

 

Governor Kristi Noem’s Proclamation:

WHEREAS, addressing the complex health needs of people with the autoimmune disease, scleroderma, is important to the State of South Dakota; and

WHEREAS, early diagnosis, comprehensive and coordinated health services for people with Scleroderma are critically important to achieving positive patient outcomes; and

WHEREAS, it is appropriate to recognize June 29 as World Scleroderma Day; and

WHEREAS, through public awareness, the State of South Dakota seeks to focus on the needs of people with scleroderma and the continuing improvement of services to those people and their families; and

WHEREAS, South Dakotans are encouraged to wear teal on June 29 in support of scleroderma awareness and to participate in scleroderma awareness-related events during the month of June; and

WHEREAS, the Black Hills Scleroderma Support Group and Sioux Fall Scleroderma Support Group, through their collaboration with the Scleroderma Foundation and other organizational partners seek to raise awareness in our communities through support, education and research toward a cure for scleroderma.

NOW, THEREFORE, I, KRISTI NOEM, Governor of the State of South Dakota, do hereby proclaim June 29, 2019 to be SOUTH DAKOTA SCLERODERMA AWARENESS DAY.

 

If you have questions, please call me at (605) 593-3759 or email me at Ron.Sasso1@gmail.com.

Agent

Ron Sasso

Ron Sasso

Phone605-593-3759