Caregivers Guide To Rare Diseases


Besides a lack of information for rare disease patients, caregivers of those Rare Warriors have even less guidence. I remember leaving the hospital, no one gave any advice to my parents on what to do with me. You know what that created? A giant, nasty monster! All of the sudden my life was controlled down to the minute, I became “bubble girl” and their fear got the best of them. That awful experience inspired this post. As someone with a rare disease, I want to tell you that there are things you CANNOT control. It takes time to accept that, and when you do everyone will benefit. 

Every disease is different, but we all hope for a cure. Some of us will be able to fight to live longer than others. Regardless of this, these are things every caregiver should keep in mind.

1. Quality of life, not quantity is important– We all will die at some point, whether or not it is because of our disease is left up to a higher power. Despite this, all patients have dreams, desires and hobbies. As a caregiver, you have a direct impact on the quality of life for your Rare Warrior. I remember my parents being concerned about me taking a trip to Disney. They were so adamant that I couldn’t go because what if I was around someone who was sick? What if my platelets dropped? What if something bad happened to me? There were a lot of “what ifs” and no consideration for me. So I went to my doctors and asked them. They said absolutely I could go to Disney and they formulated my treatment plan to allow me to have a great time. Now my caregivers are starting to realize that a happy Warrior means I can tolerate my treatments much better. If I have something to look forward to, I fight harder. Never take that motivation away, and work with your Warrior’s doctors to enrich their lives.

2. Take care of yourself– This should be common sense, but I see it happening very often. Caregivers neglecting themselves because of the Warrior’s needs. This means setting up a schedule and prioritizing responsibilities. Don’t feel selfish for saying “no” to others and don’t feel guilty for enjoying a moment for yourself. If you feel well, you will be able to care for your loved one much more efficiently. Think of ways you can include your Warrior in activities. Maybe have a spa treatment together, get your hair done, grab some yogurt. Whatever it is, make sure you are getting enough rest, eating well and keeping your mind fresh.

3. Help the cause– One way to feel empowered is getting involved with groups that work to improve the lives of rare disease patients. I don’t see many caregivers speaking out, which is a shame because that input is vital to moving forward. Find a group through Rare Connect, find information on Rare Disease Day 2015, and check out Global Genes. All of them have great information on how to get involved and share your Rare Warrior’s story.

4. Form an alliance with doctors– Don’t be afraid to talk to your Warrior’s doctors about how you can contact them with questions. Many times, they have people on staff who you can contact with any concerns. After all, most Rare Warriors have issues spring up at home, being able to make a phone call or send an e-mail can make a difference. Your relationship with them matters just as much as the patient. Sometimes you can provide them with information that can be extremely helpful with treatments.

5. Talk to someone– Taking care of someone with a rare disease is not easy. There will be ups and downs, it is very challenging both mentally and physically. Be sure to have someone you can confide in, whether it be a friend or a professional. Don’t be afraid to seek help, it doesn’t make you a bad person.