Forum Replies Created

  • katie

    Member
    February 8, 2024 at 2:31 pm in reply to: Facebook Pending

    is the group active? are other comments being posted?

  • katie

    Member
    October 5, 2023 at 8:28 pm in reply to: Skyclarys?

    i take it first thing in the morning with water. then i wait one hour to eat breakfast.

  • katie

    Member
    August 3, 2023 at 3:21 pm in reply to: Skyclarys

    my speech improved the first day. no idea if it’s causal.

  • katie

    Member
    July 26, 2023 at 3:12 pm in reply to: Reata & Insurance

    make sure you connect with reata reach: https://www.reatareach.com/

    the copay may be waived for low income patients and they appear willing to lower them for others.

  • katie

    Member
    July 26, 2023 at 12:53 pm in reply to: Skyclarys

    why is my post still awaiting  moderation?

  • katie

    Member
    March 30, 2023 at 11:26 pm in reply to: How do you cope with everyday life having FA?

    Bladder meds can be life changing. Try until you find the right one… We are all different and it doesn’t come naturally to all of us to think positive and focus on what we have but it sounds like you have people in your life to be grateful for. If you’re having trouble feeling that, you might benefit from an antidepressant or just therapy. Good luck.

    i rarely respond to these things and don’t find my connection online but we all do need to find it somewhere. i find mine in my family, my boyfriend, my dog and my hope for the future.

    the first medication for friedreich’s was just approved by the FDA. i don’t expect it to be a cure but this feels like real progress i’ve been waiting for for decades.

    ps-i’m pretty sure karina misunderstood isabelle’s message, nothing offensive was said.

  • katie

    Member
    May 20, 2021 at 2:42 pm in reply to: Check in with reopening

    vaccine passports for a vaccine without fda approval that has rarely been studied in humans before 2020.. makes no sense.

  • katie

    Member
    May 11, 2021 at 3:59 pm in reply to: COVID19 Vaccine and FA

    Since mRNA vaccines have rarely been studied in humans before 2020, as exciting as the potential of this tech is, I’d skip it in favor of johnson&johnson tech which is older. one way to check out how your individual risk:

    https://www.economist.com/graphic-detail/covid-pandemic-mortality-risk-estimator

  • katie

    Member
    February 23, 2021 at 2:55 pm in reply to: Bedsores

    i have had a sensitive spot on the heel of my foot that i’ve been keeping an eye on for several years. i put a lambswool blanket at the foot of my bed and the skin has never broken.

    another spot that did break down healed in days with walgreens brand hydrogel burn pad.

  • katie

    Member
    January 19, 2021 at 2:48 pm in reply to: Wheelchair Preference

    i’ve had a rigid ki tsunami for nearly ten years. (i have a forward brand seat cushion and another brand for the back cushion.) the last two chairs built for me had to be sent back. in order to do transfers i have to be able to get the chair close to the couch, for example, and folding chairs have an angle on leg rests that makes this impossible. it took nearly a year sales process with each chair only to find myself back at the beginning. do others find the sales people at these companies to be uninformed in helping build the right chair?

  • katie

    Member
    December 12, 2019 at 4:47 pm in reply to: Shower Chair

    https://smile.amazon.com/gp/product/B00R9MCLNQ/

    i’ve had it for two years now. worth every penny.

  • katie

    Member
    December 28, 2023 at 2:09 pm in reply to: Taking Skyclaris

    mine went up the first month and came back down on their own the 2nd.

  • katie

    Member
    October 10, 2023 at 2:51 pm in reply to: Skyclarys

    that’s bs. i’ve used a wheelchair for 20 years and was approved immediately.

  • katie

    Member
    October 5, 2023 at 8:34 pm in reply to: Skyclarys

    my enzymes went up the first month, came back down the 2nd month. not yet noticing benefits but it is really early.

  • katie

    Member
    May 13, 2021 at 3:05 pm in reply to: Vaccine

    as someone with a chronic illness that might someday be treated with mRNA technology, i think its potential sounds very exciting but until it has a few years of positive results in humans, i’ll keep masking and distancing.
    i’d be more comfortable with the Johnson and Johnson vaccine because it is older technology that has been studied longer. i’d also be more comfortable if we got to a place where we could talk about the pros and cons without accusing people of being anti-vax conspiracy theorists.