8 Things I've Learned Living Overseas With a Rare Disease

On July 16, 2016, my children and I boarded a plan from the US to Australia, a little over a year after I was diagnosed with Pompe disease. In Australia we met up with my husband. For the last year my family and I have made a life in Australia, a life that includes living with a rare disease.

Here are a few things I have learned about myself and other people in the last year:

1. I am my own best advocate. It took four months for me to coordinate my care before I could come to Australia. When I began the process, many people told me that it was not possible for me to get my treatment in Australia, because the hospital would not bill my insurance and the drug that I take is not recognized by the Australian version of the Food and Drug Administration (FDA). I did my research and found people that could help me. As I began to ask more questions, the plan started to come together.

2. I don’t have to take “no” for an answer. We have become so used to hearing the word “no” and we just accept it. Because I didn’t take “no” for an answer I was able to create a plan that allowed my children and me to join their father in Australia.

3. There are lots of people out there that are willing to help a person they have never met. During the four months that it took to coordinate my care in Australia I developed a team who worked diligently to help me make this move a reality. It stated when I put a notice on the Facebook page for Pompe disease. I was quickly connected with the Australian Pompe Association and their president, who advised me on how to get started.

I began working with my insurance provider and the hospital. My treatment costs about $140,000 per month, and of course I could not pay out of pocket for that. The only way this move would be possible is for the hospital to agree to bill my insurance. While this was going on, I was in contact with the doctor in Australia to find out if he would agree to treat me. After several months of not making any progress I asked my insurance provider to assign someone to work on my case, which they did.

Once the team was all assembled I was working with my doctors at the Cleveland Clinic, the doctor in Australia, The Australian Pompe Association, Genzyme (pharmaceutical company), the United States embassy, the hospital in Australia and my insurance provider. The only person I had met in this group was my case manager from Genzyme.

4. Although no one will take care of me like my support network of family and friends, there are a lot of people out there who will try. Living thousands of miles away from my family and friends is one of the hardest things I have ever done and it is even more difficult when you add a rare disease to the equation. In my time in Australia I have made some very good friends that have really stepped in to support me and my family. I have been able to call on them when my husband is away to pick up my boys for school and to check on me when I am sick. One of my friends has come to sit with me during treatment, which lasts about seven hours. They help me get around and drive when I can’t. I am truly appreciative of the care and support that they have given me.

5. Everyone has an opinion but the only opinions that truly matter are mine and my doctor’s. Along the way, I had several people tell me that moving to Australia wasn’t logical, that it just won’t work, that there is no way the hospital is going to agree to bill my insurance. I heard lots of opinions in the months of planning my move, but it was important to me that my family be together. I could not bear the thought of living apart from my husband for several years. As long as my doctors were onboard and felt it was safe for me, that’s all that mattered.

6. Australia has better health care options for its citizens. All Australians are eligible for Medicare, which is similar to the Medicaid and Medicare systems in America. Australians can also purchase private medical insurance. The Australian federal government is primarily responsible for funding healthcare. Medicare is paid for through taxes.

7. Changing my goals is not the same as quitting. I quit my job because we moved, and I didn’t go back to work because of my health. I really wanted to go back to work as I loved my job as a social worker and domestic violence specialist, but once I arrived in Australia, I realized that working would not be easy. Again, my health was a factor and since I am not a citizen, I can’t work for the Australian government. Before I moved, I worked with a friend of mine who helped me to start a consulting business. Working with families affected by domestic violence is my passion and I didn’t want to give that up, so I found another way to continue to be able to do that. Last year I presented my ideas in a poster at a national domestic violence conference here in Australia and I have been invited to present again this year.

8. Nothing is impossible. It has always been my dream to visit Australia. Ever since I was a little girl I have been fascinated with Australia. Several items on my bucket list involved me visiting Australia. When I was diagnosed with Pompe disease in 2015 I thought I would never make it here. Afterall, I have to be at the hospital every other week for treatment. During my time here I have checked several items off my bucket list including visiting the Sydney Opera House, whale watching, and my number one item, snorkeling the Great Barrier Reef. Two years ago I had given up these dreams, but now I look at the things I have done. I feel incredible thankful to the people that helped to make my move to Australia possible. Because of their help I accomplished my number one bucket list item.

I will not lie and say that this last year has been easy or always enjoyable. This has been one of the hardest times of my life. It is very hard to be away from my parents and siblings during the holidays. My dad was really sick last year and had major surgery. I have been hospitalized and had to watch my parents worry as my husband and the doctor explained what was going on via video chat. Leaving my job was very hard, not working is even harder.

There are times where I feel like I don’t contribute to my family in a meaningful way, but this adventure has made my relationship with my husband so much stronger. There have been hard times, but there have been wonderful times as well and I have met some really great people along the way. I am fortunate to have wonderful knowledgeable doctors here, and the nurses that take care of me during treatment have become like my family. I have also learned some important things about myself and I am still learning from this experience.

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