Fabry disease causes a variety of symptoms that can be painful, uncomfortable, and inconvenient. For example, pain in the hands and feet, reduced or absent sweating, tinnitus, and gastrointestinal pain are just some of the issues people with Fabry disease struggle with. For many, the emotional stress makes symptoms worse.
People with Fabry disease are also prone to potentially life-threatening complications like kidney damage, heart attack, and stroke. Managing this condition is essential to maintaining overall wellbeing.
If you’ve been diagnosed with Fabry disease, there’s no cure (yet), but the following strategies will help you live a meaningful life in spite of your condition.
1. Learn as much as possible about Fabry disease
Educating yourself about Fabry is the best way to manage your symptoms. Learning more about your condition will help you identify unidentified triggers and you won’t feel so alone.
For instance, it helps to know why you’re experiencing symptoms because you’ll understand more about your treatment options. Currently, there are two FDA-approved medications in the United States: an enzyme replacement therapy and a chaperone therapy.
To learn more, YourDNA.com published a scientifically-reviewed article about Fabry disease that covers the cause, genetic inheritance rates, symptoms, treatments, and prognosis.
2. Join a support group
Support groups can be a huge relief and a safe place to share experiences and feel connected to others who understand what you’re going through.
To get support, you’ll need to look for a support group either in person or online. You probably won’t randomly bump into anyone else with Fabry disease. It’s estimated that 1 in 50,000 males are affected by Fabry disease, which equals about 3,000 males in the entire country. The prevalence of Fabry disease in females is unknown.
Since Fabry disease isn’t that common, you might have an easier time finding and participating in an online group.
3. Stay in the present moment
Staying in the present moment is simple, but not easy. The idea is to acknowledge what that is without moving into a space of regret or longing for things to be different. Of course, it’s only natural to wish things were different when you’re in pain. However, the longer you stay in that space, the harder it is to come out.
Accept your situation as it is. You don’t have to like it – you just need to acknowledge your situation. Keep your eyes on the future and don’t allow yourself to get drawn into thought patterns of what could have or should have been different.
4. Get treatment
Sometimes it’s hard to imagine a life without pain when you’ve been in pain for so long. Don’t wait too long to seek treatment. Many Fabry patients report relief from the currently available treatments.
If your kids or other family members have Fabry disease, watching you get treatment will make them feel better about seeking treatment for themselves.
5. Speak to people about Fabry disease
Plenty of people derive meaning from their lives by putting their attention on others. One method is to become a speaker and educate others about your cause.
While you may not come across many people with Fabry disease, speaking to others about it can make a huge impact on how others perceive people with invisible disabilities. A woman named Linda, who now educates people about Fabry disease, says “I want people to know that Fabry is an invisible illness, so don’t judge me by how I look, because I may look okay, doesn’t mean that I am… I want people to know that Fabry is disabling.”
If you don’t feel comfortable speaking in person, start a YouTube channel – you’ll reach a wider audience.
6. Read other people’s stories
Reading other people’s stories will make you feel less alone in your journey. To find personal stories, try searching in search engines for the phrase “I have Fabry disease” to narrow down your results and avoid medical publications.
Your search will probably turn up articles and PDF files like this personal story submitted to FabryDisease.com.
If it’s hard to find personal stories using Google, use DuckDuckGo to get better results.
Honor your needs first
There will always be people who won’t understand the limitations imposed by your condition. Honor your needs regardless. Explain enough to people so they understand your situation, but don’t feel obligated to defend yourself if they aren’t willing to meet you half way. Surround yourself with people who are willing to go with the flow and change plans if needed.
