As a first time patient partner I wasÂ not sure what to expect but after getting to know my running partner Sophie Hu this past few months, it has turned out to be a wonderfully positive experience for me. After 2 years of daily debilitating headaches, light sensitivity, partial vision loss as well as a whole host of other equally life altering symptoms, not to mention the hoards of tests and doctor visits that yielded no explanation, I was finally diagnosed in March 2015 with the catch all Idiopathic Intercranial Hypertension (IIH). I would like to say I’m a positive person, but the illness definitely has created a sometimes angry and resentful version of me, forcing me to spin in circles of frustration. For me, meeting Sophie and being a part of this experience has given me a bright place to go, one where there is no judgment or expectation but instead a genuine interest in understanding my day to day situation and a desire to help others like me afford the road to diagnoses and bring attention to the little known diseases many of us life with. Due to the exercise intolerance my condition yields I can no longer run myself, but living vicariously through Sophie’s training for the Â Half Marathon and her willingness to run in honour of myself and IIH I have been given a new sense of strength and determination to fight this and take back my life. I would like to thank all the organizers, runners and volunteers for giving so much of your time and energy to this experience. The money raised will hopefully yield answers to those struggling for diagnosed bringing peace and health. To my great dismay due to the fact that I am no longer in remission and just experienced my 3rd Lumbar Puncture (Spinal Tap) in 13 months today, I am not physically be able to join Sophie in Providence for race day but I will be there in spirit and hope to be well enough to participate more fully next year. Good luck to Sophie and all the runners and thank you again from the bottom of my heart for being such an inspiration.
We will be on the sidelines cheering Sophie on for you Kristine. If you’d like to face time Sophie during the run we can try and arrange that too. Let me know and I’ll try and set something up.
Hi Kristine! Thank you for your kind words! It has been an honor getting to know you, to learn your story, and to witness your strength. I am excited to be running on your behalf on Sunday.
Although they are very different disorders and often different treatments with my Communicating Hydrocephalus being secondary to an underlying Lysosomal Storage disorder I DO understand your frustration with your newer IIH diagnosis.
While I have 2 (programmable ) shunts for my Commun. Hydro and a lot of surgeries for it (40 or so shunt surgeries in 5yrs, 3 prior to that since the Hydro dx in 2005.
Anyways I write all this to let you know I understand your sentiments, frustrations and thoughts.
Best wishes hun,