SPF 2019 - "An Effective Treatment for HSP - What Will it Take?"

[@il3mendo]

I have hsp spg4, celiac disease, EoE, Ibs (bile acid malabsortion), lactose intollerance, fructose malabsortion, previously iron anemia, anemia of chronic disease ( High ferritin with low folate), severe vitamin D deficiency and when I went gluten free 6 years ago I developed a metabolic syndrome with high glucose fasting, high tsh, high lipid prifile ( low hdl and really high cholesterol. I had nerves and tendons pain since my early childood. I met my neurologist 2 weeks ago and now I have both Babinski sign and also both Hoffman signs. Despite my situation I found improvement with a pure carnivore diet. As far as I read ( I am more and expert on celiac disease), the hsp is and atp disease. By removing glucose, fructose, high supplementation of vitamin D, by removing gluten( even rice, soya, teff), i have noticed improvement.

[@رحال-س8خ]

I aso got got 2 children one 12 and other 8 with HSP type 56 as the blood genetic results says.

[@Noise_ninja]

A name for my condition that doesn't contain an abelist slur, what will it take? Or is that too much basic dignity for a spastic like me to ask for? I was born with this in the seventies. I've had no support, I've just been shunned, belittled, rejected, neglected and left to fall between all the cracks in our health and welfare systems. I'm over 50. Never had a job. Always lived in poverty with no support from anything or anyone. Now I can't even get a bulk billing GP. Wish I'd just die.

[@christianlevan4981]

I have a 16 yrs old daughter with hereditary spastic paraplegia.She diagnosed when she’s 3 yrs old

[@doloresmartins146]

Hi, it looks like my two year old granddaughter might have this disease, we haven’t been officially told, can you pls tell me if your daughter walks and how old was she when she sat unassisted? Thank you

[@julioarroyo8793]

Mi wife have hsp she start it at age of 36

[@makealotofmoney9955]

@@doloresmartins146 Did she get vaccinated recently before she developed it?