I am 53 and have been symptomatic all my life, (HSP3a). I have a cousin with HSP, but we don't keep in touch, my dad and an aunt also had HSP, but have since passed away. Other than these 3 family members i have never met anyone else with this disease. I am at the stage now where i use a wheelchair whenever i leave the house, i use sticks inside the house, i now fall several times a day. It would be great if i could meet others with HSP face to face. I just don't know what the future holds for me, in regards to this disease