Hi, my name is GrammySherry. I'm here because my two grandsons (3 years old and 4-1/2 months old) were diagnosed (4 months ago) with Adrenoleukodystrophy (ALD). First our newest grandson was diagnosed through genetic sequencing, then we learned the sad news that our 3 year old grandson also has ALD.
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During our conference in Portland Oregon March 30 - April 1st we will have endocrinologists speaking on Cushing's, Primary AI, Secondary/Tertiary AI, and more. There will also be experts covering topics such as:
SSI/Disability
IEP/504/Health Plans
Health & Nutrition
Advocacy and Legislation
Any endocrine, thyroid, or growth hormone issues
Working with a chronic condition
Creating Community
Learn more and register
united4rare.org/aiu-csrf-conference-2023
#AddisonsDisease #AdrenalInsufficiency #PituitaryTumors #Panhypopituitarism #SeptoopticDysplasia #Adrenoleukodystrophy #CongenitalAdrenalHyperplasia
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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
Sent from app 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
How are you celebrating #RareDiseaseDay? #RareDisease #CRPS #ComplexRegionalPainSyndrome #EhlersDanlosSyndrome #AdrenalInsufficiency #TrigeminalNeuralgia #Adrenoleukodystrophy #Dup15qSyndrome #MarfanSyndrome #Sarcoidosis
Sent from app #AddisonsDisease #AdrenalInsufficiency #Adrenoleukodystrophy #AdrenalGlandTumor #CongenitalAdrenalHyperplasia #AdrenalFatigue
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