Caring for Someone with a Rare Disease

February 28th is Rare Disease Day. I interviewed Emily Liptak of the Mesothelioma + Asbestos Awareness Center to discuss how to care for someone with a rare disease.

Caring for someone with a rare disease may seem like a daunting task but with the right information and preparedness you can make a big impact on their lives.

Rare Disease Day is the perfect time to educate ourselves on what a rare disease is and how to care for those that are impacted by them.

A disease is considered rare in the United States if it affects 200,000 people or less. A rare disease is not limited to age. Anyone can be diagnosed so each treatment type will vary, regardless of similar diseases or illness.

Communicating with the doctor

The first step in caring for someone with a rare illness is to understand that illness. This may occur through research but it's also important to talk to their doctor so you can understand their specific needs. This may seem intimidating, but asking questions is the best way to learn about the person you're caring for. Get to know the doctor in order to make yourself more comfortable when at appointments and will make the one you're caring for feel confident about your help.

Each doctor has a different "care style" and understanding that will guide you in implementing a treatment plan that is best for them, while also getting a sense of what to expect going forward. A caregiver's involvement with any related medical specialists will help define roles between what is the responsibility of the medical professional versus the caregiver.

Create a list of questions to bring to the appointment. Most importantly, encourage whoever you are there for to speak for him or herself. It can be easy to hide behind someone else, but they need to understand their rare disease too, and the doctor may be more receptive to them. It may also be a good idea to have the person you're caring for add you to their HIPAA so that you have access to their health information as it may be required when asking questions in an appointment even if they are present.

Knowing the illness

Understanding the illness is important for a doctor's appointment but it is even more vital when caring for someone outside of the doctor's office. When you are home with them, you are most likely the one they turn to for medical help, receiving their medicine and overall informative care. Each disease is treated differently when it comes to medicine, physical therapy and daily life. A rare disease like mesothelioma, which is caused by asbestos exposure, will be treated through surgery, chemotherapy and multimodal therapy. Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, is treated through medication and several forms of therapy. Because this illness is incurable and progressive, medications can still help but breathing, physical, speech and occupational therapies will assist in maintaining different aspects of health and allow for the patient to remain independent for a longer period of time.

At home care

If the person you're caring for was recently in the hospital but is soon going home, understanding their discharge terms and what needs to be done post visit is essential. Depending on the illness, a patient may recover differently and need varying support at home.

Receive proper training for equipment that may need to be used such as an oxygen machine.

Know the potential problems that could occur so you can be prepared to respond and also take time to understand the specific dietary restrictions someone may need to adhere to. You will be relied on most when the one you're caring for is going through treatment or recovery. Relying on your own research and preparedness, as well as the help of doctors, will allow you to understand the situation for yourself and take care of someone to your highest ability.

While being a caregiver is the most important, don't forget to care for yourself.

Providing care for someone with a rare disease can be physically and emotionally challenging.

Taking time to relax and recharge is a vital step in the caregiver process. Otherwise, you will not fully be able to care for someone else.