Social Work and Rare Disease Day

by: Emily Walsh and Deona Hooper

In honor of Rare Disease Day, the Mesothelioma Cancer Alliance is working with Social Work Helper to spread awareness about the effect that rare diseases can have on a person and their support system and also what resources are out there to help ease some of the added strain. Rare Disease Day is an awareness campaign that was created by EURORDIS in 2008 that shares information relevant to rare diseases that affect people all over the world.

Though each individual rare disease affects a small percentage of people, 1 in every 10 Americans suffers from such a disease, making it a more prevalent issue than many would think. Why does having a rare condition differ from having a more widely known disease and what resources are there to support those who find themselves in need of help?

David vs. Goliath

When a person receives a diagnosis of a rare condition or form of cancer, such as mesothelioma, it can often be difficult to know where to begin. Doctors can provide guidance, but often those providing the initial diagnosis are not specialists in that particular area. It then falls to the patient to follow through with receiving a second opinion from a specialist, who could be located several hours away in the nearest large city or even in another state.

Once an appointment can be made, the waiting period often leads patients to research their condition online. The internet can be a blessing and a curse when pertaining to medical information. Science based and medically sound websites can provide a wealth of information, but there is also the possibility of finding false information or statistics that may seem alarming. However, there are also support groups that can be found, where patients can discuss their concerns with others who have been in their situation.

Even with support of doctors, family, and friends, receiving a rare disease diagnosis can feel insurmountable, but there are resources available that can help.

How are social workers able to help?

Being diagnosed with a rare disease or chronic health condition can be extremely taxing both physically and mentally. Many hospitals, doctor’s offices, and palliative care centers have social workers on their care teams to connect patients to information, services and resources in order to help them navigate through this difficult time. Social workers are there to help the patient and family identify barriers to treatment and achieve their overall wellness plan.

There are also oncology social workers who specifically specialize in assisting patients with a cancer diagnosis such as mesothelioma. “Oncology social workers provide information on resources, medical and insurance coverage, and how to talk to your family and the children in your lives about cancer,” Penny Damaskos, Director of the Social Work Department at Memorial Sloan Kettering Cancer Center in New York City, said to the American Society of Clinical Oncology.”

Long term care for chronic conditions not only affects the physical and mental health of the patient, but it also impacts the mental wellness of their caregivers. Social Workers provide approximately 60% of all mental health services in the United States, and engaging in individual and/or group therapy should be considered as part of the patient’s holistic wellness plan. Telemental health services maybe also be an option for patients and family members who have financial and/or transportation barriers preventing them from engaging in traditional face to face therapy.

What are some social worker resources for those who have rare diseases?

Knowing where to look for information and resources during a crisis can be overwhelming especially if Google is your only ally. Although a staff social worker is the best access to information, it may take sometime before you are connected.

Social Work Helper has created a mobile app to help individuals and families find highly recommended resources and services in their local area ranging from mental health services, low cost prescription drugs and palliative care services to food banks and other social services. Download here!

Published by

Deona Hooper, MSW

Deona Hooper, MSW is the Founder and Editor-in-Chief of Social Work Helper, and she has experience in nonprofit communications, tech development and social media consulting. Deona has a Masters in Social Work with a concentration in Management and Community Practice as well as a Certificate in Nonprofit Management both from the University of North Carolina at Chapel Hill. View all posts by Deona Hooper, MSW

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