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.
The CFC or Combined Federal Cam-paign is a fundraising campaign the Federal Government offers its employ-ees to participate with each year. It begins Sept 1st and goes through Dec 15th. Federal employees are allowed to pick from over 200 registered nonpro-fits to contribute to. Many CFC fairs will be held at Federal facilities throughout the campaign. This allows employees to learn about the nonprofits and make their selections.
Please let friends and family members who are Federal employees know they can choose the Spastic Paraplegia Foun-dation to donate to. The SPF CFC num-ber is 12554. The following are exam-ples of Federal employees: law enforce-ment, mail personnel, VA or Veteran’s Administration employees, Medicare, Medicaid, military and many types of governmental jobs. If donors want to know more, please have them log on to
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