How to use Folia if you have PNH
The concept of Folia was inspired by our founder Nell’s mom, who religiously tracked every symptom and treatment for her son (and Nell’s brother), who has CVID. While she tracked via pen and paper, with Folia, you can track whatever you want, whenever you want, and you’re capturing your data in a structured way so you can draw insights about your health.
While you can use Folia in many different ways, below are a few examples of how you could track your PNH:
Kris was recently diagnosed with PNH, and she’s still trying to understand what makes her fatigue flare-up, despite her infusions.
Like many people with PNH experience, Kris gets very fatigued, and it still flares up, even with her infusion treatments. She tracks her fatigue regularly in her Folia journal, and when she feels particularly fatigued, she’ll also track it as a flare using the flare form.
She tracks anything that recently happened in the Flare Triggers section. When something isn’t already listed, she uses the “+Add/Edit” to create her own tag that she then re-uses when applicable in the future.
She saw in her Insights section that she would often grocery shop and walk her dog in the same day before her fatigue got really bad, if she was nearing the end of her infusion cycle. This helped her plan her activities in the few days leading up to her next infusion to prevent too much overexertion. She also showed her doctor the pattern of her fatigue, and they decided to shorten her infusion schedule by 1 week, which has drastically cut down on her flares.
Steven wanted to understand what low hemoglobin levels actually looked like for him in terms of his physical symptoms.
Steven has been tracking his symptoms in Folia for a while, and he wanted to understand what his symptoms looked like depending on his hemoglobin levels. He entered his hemoglobin levels in Folia for his most recent labs, and his past few by using the Quick Track function and changing the date to go back in time.
He graphed his symptoms against his hemoglobin levels to see that certain symptoms tended to indicate his hemoglobin was dropping, including feeling more dizzy, feeling fatigued after activities he normally wouldn’t feel fatigued after, and having cold hands and feet. Now he can take more proactive measures earlier and talk to his doctor when he starts to notice these symptoms.
Lila has her PNH well-managed, but she still tracks daily to participate in research.
Contributing to research and helping develop new treatments for PNH is really important to Lila, despite the fact that she feels her PNH is currently well-managed. For the most part, she’s happy with her current treatment plan, but she tracks her day regardless, which helps researchers understand how her treatment plan impacts her quality of life. In addition to her PNH symptoms, she also tracks her menstrual cycle in Folia, as she’s noticed that her lightheadedness and fatigue get worse around this time.
