- Gitelman syndrome
- Interviews
Ashley's interview
How did all start?
Looking back, it started when I was young. I had intense salt cravings as a kid. I was always very tired and never handled the heat well. I had several charlie horses most nights as a teen. I also had anxiety and "panic attacks" as long as I can remember. I now know that they were most likely runs of tachycardia from low levels. In college it got very bad and I ended up collapsing at school. Soon after they discovered the hypokalemia.
Do you already have a diagnosis? How long did it take you to get it?
Yes, it took about two years after realizing that my potassium was low. I ended up seeing three specialists and countless ER doctors.
What has been the most useful thing for you so far?
The most helpful thing has been learning to advocate for myself. Doctors like to think they know best. I'm sure that most of the time that is true. The thing is that most of the time the only experience they have with GS is remembering it being mentioned in med school. If you know something works for you or something doesn't, don't be afraid to stand up for yourself with doctors or other healthcare professionals. Logging my food was also helpful. I was able to make changes in my diet and see how that correlated with my levels.
What have been your biggest difficulties?
1) Finding balance
2) Getting through each day pre-diagnosis with everyone around me thinking it was all in my head while I knew something was wrong.
3) Finding my voice
How has your social and family environment reacted? Have your social or family relationships changed?
Yes. In the beginning it strained most of my relationships. The people close to me were frustrated because they thought my symptoms were made up or made worse on purpose. After I was diagnosed they all felt bad and were almost to the other extreme. If I missed a call from them or they missed a call from me they would assume I was having some sort of medical crisis. Now they are confidant in my ability to manage it and I'm not having episodes every week, things have settled back down.
What things have you stopped doing?
I stopped exercising for a long time and now only do so in air conditioning. I stopped drinking coffee and alcohol. I stopped traveling alone. Not to say that I can't, I'm just not comfortable.
What do you think about the future?
I think that it looks hopeful. I do not feel like any of it will be limited by GS.
So far, which years have been the best years in your life? What have you done during them?
I think that the best years are to come.
What would you like to do if you didn’t have your condition?
I would do outdoor sports like hiking and running. I would also travel, mainly somewhere tropical.
If you had to describe your life in a sentence, what would it be?
I would say that right now it can be described as stable and after the last few years, that's a beautiful thing.
Finally, what advice would you give to a person in a similar situation?
Don't give up. Don't be afraid to ask questions and fight for answers. It's your life.
