NephCure Back To School 2024 | 504, IEP, and more

[@sarahmansoor6173]

What helped with my swelling, dizziness in school was compression stockings to help increase blood flow.

[@sarahmansoor6173]

I was diagnosed with C3GN, another very rare type of kidney disease at age 9. Now its been 10 years, I am now 19 and have gone through a lot of crazy stuff over the years but just recently started college and had to talk to student advisors for accommodations id need over the time of post secondary education. I have been given steroids, immunosuppressive drugs, ACE inhibitors, i have at 19 already had 3 renal biopsies, been in a come, had PRES syndrome near time of diagnosis causing me to lose my memory completely to the point where i didn't know my own mothers name.

[@NephCure]

Sarah, I'm so sorry to hear about such a challenging journey. Congratulations to you for beginning your next life chapter in college, did you have difficulties discussing accommodations for yourself? Also, do you need any resources that could potentially be of help to you?

[@sarahmansoor6173]

I didn't struggle with getting accommodations like excused absences for appointments, memory aids for exams, extensions on due dates during busy health concerns. What I didn't even ask for was having an attendant which is an accommodation my faculty advisor herself recommended for when I have nausea with disorientation to help make sure I don't hurt myself like tripping or falling, losing my stuff or just helping me recoup after the disorientated state ends. All these accommodations are very helpful but at the same time, they can also make me feel vulnerable when my thoughts prove to me that "see, C3GN is never going to leave me alone, I'm never going to be normal", but I know that's just my anxiety and depression talking.