This article is by SP Foundation Board Member Jackie Wellman
Just last week I had the second person in my family die from urinary tract infections caused by having HSP and it went systemic. Yes, die from a urinary tract infection that went systemic.
The first was in 2000 and it was my Grandma. She died from a chronic urinary tract infection that went systemic. Last week my 63 year old Uncle John was the second.
This article is to warn you that urinary tract infections are nothing to mess around with.
If you have bladder issues with your HSP or PLS, like urgency, then chances are you have to go all the time because you are not emptying. Our bladders just do not work right; therefore they do not empty completely. Even though you may feel like it is. If you have to urinate within the next hour it is because there is too much in there….because it did not empty completely.
Think of a pond that does not get drained…it gets gross. Unpleasant things start growing in it. Same thing with the bladder…not green algae, but nasty bacteria. Those bacteria can become resistant to antibiotics and then you are in trouble.
I used to get UTIs frequently. The doctor talked me into trying to self-cath morning and night. I have not had an infection since. That was about ten years ago. I now get bladder Botox and self-cath about six times a day. Every day. Yes, I would much rather not do it but the alternative is to die…at least in my family. The bladder Botox is painless also. I feel normal for 6-9 months. It’s worth it in every way to me. Before doing Botox I was visiting the bathroom every fifteen minutes.
I urge you, if you are debating about whether or not to start self-cathing, to bite the bullet and do it. It is painless and easy. Not the most convenient thing but better than the alternative.
Giving Tuesday was a great start on our year end goal. So far we have raised over $46,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
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.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.