Learning about rare diseases is one of the first steps towards advocacy. If you or a loved one are affected by cold agglutinin disease (CAD), you may want to get involved with efforts to raise awareness, fundraise, and advocate for CAD patients. Before that, it’s important to learn about the disease.
About Cold Agglutinin Disease (CAD)
CAD is a rare, autoimmune disorder that occurs when the immune system mistakenly attacks the red blood cells. These attacks happen in the cold, at anywhere from 32 to 50 degrees Fahrenheit, as the body’s antibodies bind to the red blood cells and destroy them. The destruction of the blood cells leads to fatigue, dizziness, headaches, vomiting, pale skin, diarrhea, ringing in the ears, dark urine, discolored skin, heart problems, yellowing of the eyes and skin, pain and blue coloring of the hands and feet, and pain in the chest, back, and legs. These symptoms are typically worse in the winter months.
In terms of cause, CAD can either be primary or secondary. The former means that that the disease occurs spontaneously, while the latter means that another disease is the root cause of CAD. Medical professionals do not know the cause of primary CAD, but they know that the most common cause of secondary CAD is mycoplasma pneumonia. Other immune disorders, cancers, or infections can result in CAD as well. Looking towards treatment, physicians will tailor a treatment plan based on symptoms, severity, and underlying cause. Treatment options include a reduction in exposure to the cold, plasmapheresis, prescription medications, and treating the underlying cause if it is known.
The Point of Advocacy
Now that you know more about CAD, you can turn to advocacy. The first thing that you should learn is the point of health advocacy, what the goal is. Goals include:
- Advancing policy initiatives that will further safe and quality care
- Bettering the health and well-being of patients
- Promoting the patients’ right to healthcare.
Within these goals, health advocates also push for medical systems that focus on the patient while remaining safe and accessible. They also want to better include the patients’ voice when creating and running healthcare systems. Patients are also involved in making these goals, so that they best represent what they need.
Turning to policy, health advocates should identify and name issues that require attention. They should also collect data on the current system, provide feedback, and monitor current legislation.
NORD and Advocacy
NORD, which stands for the National Organization for Rare Disorders, is a nonprofit that advocates for all rare disorders. They work with patients, medical professionals, and other advocacy groups. They organize portion of Rare Disease Day, call for wider use and increased access to telehealth, and push for a Rare Disease Advisory Council in all of the 50 states. In addition, NORD empowers leaders in healthcare to turn to rare disease research and helps other advocacy organizations reach their goals.
Advocacy for CAD
The Cold Agglutinin Disease Foundation is an organization that advocates, provides information, encourages, and supports patients and their loved ones. The group goes beyond this by updating patients on the development of treatments, providing detailed information on CAD, and suggesting how to face everyday situations with CAD.
If you want to connect with other CAD patients, find a doctor with knowledge and experience in treating CAD, or learn more about therapies in development, the American Autoimmune & Related Disease Association can help.
Further Advocacy Efforts
Other efforts to raise awareness and advocate for patients include:
- Rare Disease Week on Capitol Hill (July 19-22)
- Rare Diseases Clinical Research Network survey was released online
- Rare Diseases Registry Program
- Global registry for CAD patients launched by Sanofi
As CAD patients see limited research and treatment options, all advocacy is necessary, and even more is needed.
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