Many individuals with all the signs and symptoms of HSP do not appear to have similarly affected family members. Without proof of a hereditary link, some neurologists call the condition Spastic Paraplegia or Apparently Sporadic Spastic Paraplegia. Other clinicians may diagnosis the same condition as Primary Lateral Sclerosis (PLS), which mimics HSP in how it affects the lower body. However, current researcher indicates that PLS eventually affects the arms and speech and swallowing muscles as well as the leg muscles. There are many reasons why someone with HSP may not have a family history. Recessive and x-linked forms skip generations, which means the disorder may pass silently for generations and then suddenly appear. In addition, the age of onset, progression rate and severity vary widely so that the disease could have gone undiagnosed in previous generations or an affected individual may have died before symptom onset. Mistaken parentage or new genetic mutations are also possible. Please see Heredity and Genetics for more information on this and genetic testing.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.