Choosing your healthcare provider can be as important and daunting a challenge as finding your life partner. You need someone who will advocate for you and who has your best interests at heart. You need someone who is passionate about what they do and who wants to make a difference.
My husband and I have a cat and two dogs because I believe no home is complete without pets to love. Our animals sleep in our bed and come along on family trips — they are our “fur-children.” As my health has declined, I’ve come to see these pets as…
What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”? There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make…
This past week, I was lucky enough to attend the RareX 2018 Conference organized by Rare Diseases South Africa. It was a chance for healthcare professionals, support groups, and patients to meet up, interact, and attend really interesting lectures. I knew it would be a worthwhile event, but…
Before my diagnosis, I was perfectly healthy. Even childhood ailments like chicken pox or mumps didn’t inflict me. In fact, I had never even had the flu! I was an extremely active girl and am proud to say that I even had a six-pack from all of my competitive dancing. At…
This year I turned 30. For most of my friends, their 30th birthday meant they could have a big party and use it as an excuse to get together. For me, it was more of a celebration of life and the fact that I am alive. Over the past year,…
When you first get sick, it’s difficult to keep up with the number of cards, bouquets of flowers, and hospital visits you receive. Every day someone comes to visit you in the hospital, and you run out of space to display all of your gifts. However, as time goes on,…
At school, I wanted to belong to the “cool crowd.” I used to watch them from the outside and was so jealous of the way they seemed to glide around school, owning every little aspect of it. We all wanted to be in their little clique because they were the…
When I was diagnosed in 2004, it was a shock to my entire family. We had never heard of this disease and had no idea what it meant for my future. I had to take a year off school due to hospitalizations, treatments, and a thymectomy. I felt like…
Recently, I was chatting with some of the other ladies in my support group who have been on a similar path as me — constant hospitalizations and relapses. They have also been through the heartbreak of having yet another treatment not work and the uncertainty of their future, health-wise. We…
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