Adrenoleukodystrophy

Join the Conversation on
Adrenoleukodystrophy
273 people
0 stories
10 posts
  • About Adrenoleukodystrophy
  • Explore Our Newsletters
  • What's New in Adrenoleukodystrophy
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Question

    I was on a medical diet for more than 15 years. Then I was off the diet as I was proven I don't need it anymore. I obsess and binge eat.

    I obsess and binge on foods I never got to enjoy from my childhood. Any way to control it more and not binge eat? Most of you might not know what condition I have and it's a pretty darn long story. If you are interested, look up the movie Lorenzo's Oil. Anyway I was on a strict low fat diet for more than 15 years and it affected my life as I know it for years. I was recently off the diet and I was obsessed with the new foods I never got to eat. I even sneak them at night. It's really a pain and I feel like I have an eating disorder from it. Anyway to ease the binge more and have control while celebrating my new found freedom? #BingeEatingDisorder #MedicalDiets #Adrenoleukodystrophy

    Post

    Everyday life with autism and a rare disease #Autsim #Adrenoleukodystrophy

    For all you people who are wondering what is life like with autism and ALD, it can suck but you gotta push through. For starters I have the disadvantages of Autism and not eat much fatty foods. At least I'm verbal. Sorry, I don't like to use "functioning" terms. Anyway everyday life is always stressful. For starters you can eat only 20 grams of fat per day which isn't enough for most people. I constantly have to take pills, and go to many many drs visits. More times than the average person. Plus you feel like there is not enough research on the disease. On to Autism. I have some social disadvantages as well. You have to face some stress. Bigots making fun of the spectrum calling us "weird" "monsters" but that is simply not true. My life is always busy with some running around to services, Drs, etc. I always get stomach aches from all the stress. I'm always tired and I feel done. My life is always hectic even as a little kid where life should be care free. I do thank the people in my life about their help and things. I constantly need vacations because I just need a break with the constant struggle with autism and ald. I just want to spread awareness. Thank you

    Question

    To my fellow Addison peeps, does anyone find their upper back hurts when they are due their next dose of steroids? (I’m on hydrocortisone)

    #AddisonsDisease #AdrenalInsufficiency #Adrenoleukodystrophy #AdrenalGlandTumor #CongenitalAdrenalHyperplasia #AdrenalFatigue