My sister, Leah is a single mother of 2 beautiful children who's been hospitalized since may 28th 2024 with Guillain Barre syndrome. Guillain Barre is a very rare autoimmune disease that makes the immune system attack the nervous system causing paralysis. And after two relapses with treatments, 2 rounds of IVIG and 2 rounds of plasmapheresis she was also diagnosed with CIDP which is an even more rare autoimmune disease, it’s very similar to Guillain Barre but has longer and more frequent flare ups and isn’t as text book, which makes it more of a case by case type of ordeal. She is now going to need plasmapheresis treatments as maintenance every 1-2 weeks indefinitely from here on out.

She has been paralyzed from the waist down due to the illness and hasn't been capable of working since the hospitalization (she is currently still hospitalized) and she is about to lose everything and is seeking any type of help. Her insurance had been refusing to help her and is trying to kick her out of the hospital against the advisory of doctors. She was able to switch insurance providers which took effect August 1st so hopefully won’t have any more issues on that end. She has filed for disability, which is not an easy process, and IF she is approved for disability the very earliest that she would see any help would be in November. You usually get denied the first time around though. We are trying to set this up to help cover any medical expenses not covered by her insurance, all of her bills and expenses that she has fallen behind on from being hospitalized for working on 3 months now. We are trying to help her to lessen the stress so she can focus on learning how to walk again, how to shower, dress herself, cook and do normal day to day tasks.

•••••••••••UPDATE:••••••••••••

Just when I think maybe things might be getting better something else happens and I feel as helpless as I did this time last year. I got denied for my reconsideration for disability, my lawyer is appealing it and said this time it should go in front of a judge. So I’m praying something happens because I’ve been out of work for over a full year now. And unfortunately things aren’t getting any better physically or with my health. My cardiologist started me back on metoprolol (didn’t do anything the first time) and is also starting me on ivabradine. He referred me to an electrophysiologist who said my cardiologist is justified in his concerns with my tachycardia. They diagnosed me with inappropriate sinus tachycardia and said it’s been likely I’m going to need surgery on my heart. I have to take these meds for a little and repeat the heart monitor and between the heart monitor and the ivabradine it should help pinpoint what part of my heart is malfunctioning. I just found out at that cardiology appointment that the heart monitor I did back in the fall and the ekgs I’ve done in the office all have shown something, even though the lady that called when they got the results for the heart monitor said everything was fine. My cardiologist as first was somewhat concerned about my heart rate but thought the further out in my recovery that I got that it would stabilize and go back to normal but unfortunately it’s not. I also saw my neurologist last week and my heart rate was the first thing she brought up, asking how long I’ve had it for. She said it should be in the 70s and mine at rest is upper 120s-140s. She said between the tachycardia and CIDP, they explain my memory loss and issues and being completely exhausted constantly. She said she’s happy that I have the right drs and specialists taking these issues seriously and doing something about it. I have more doctors and specialists than I can even keep up with, I believe it’s 17 different doctors that’s I’m seeing regularly and that’s not counting physical therapy, mental health therapy and my IVIG treatments twice a month. I’m praying I won’t have to have heart surgery and praying as always that things start getting back to normal soon. I never thought that I would still be here dealing with so many issues over a year later. And thank you to anyone who has been here for me along the way and to anyone who has helped in any sort of way. I appreciate you all more than you know.