More SPS News, Photos and Videos
Various SPS-related pictures of people, places, events. This is a community area where people can share memories of all kinds. If you would like us to host, or link to, your SPS-related pictures or videos, please contact us at: email@example.com
SPS Silver Lining for Greek Champion
Added September 2019: SPS sufferer Alexandra Stamatopoulou, from Piraeus near Athens, Greece, claimed silver medal in the 2019 World Para Swimming Championships in London on September 13. Alexandra, who won a silver and bronze at the World Para Swimming Championships in Mexico in 2017, claimed second place in the final of the women's 50m backstroke in a time of 52.86 seconds. Watch the race in the YouTube video below.
SPS Brings Sufferers Together
Added August 2019: Stiff Person Syndrome may be debilitating, but it’s no barrier to making new friends, no matter how far away. That’s how it was for Adrienne Shaffer and Katie Manning in July this year. The dynamic duo “met” via the Stiff Person Syndrome Association Facebook page. Katie, from Trenton, Michigan, found Adrienne because she was heading to the desert city for treatment and thought it would be great to meet up with a fellow sufferer, especially after enduring a 2,000 mile trip to the Strip. “We had been messaging for a few weeks, discussing care, but I was definitely excited to meet her,” said Adrienne. They had dinner at a Vegas eatery. Said Katie: “We hung out for about 2 hours. It was actually kind of funny because we were able to laugh about things because we understood each other so much. We both had to keep saying “I don’t remember what I was talking about” … that darn brain fog, lol.” They were both diagnosed in 2017. “We discussed how we both started with low back pain around the age of 19. We both took about a year to be diagnosed,” said Adrienne, adding: “We definitely bonded over brain fog and laughed about it as well as our walking aids when we need them. It was amazing to speak to someone that truly gets it. I’m so thankful to have met her.”
US Students Rally for Awareness
Added May 2019: Devoted son Eugene Okari and five friends came together at their Prom to help raise SPS awareness. Eugene (19) from Plymouth, Minnesota, was supporting mom Monicah Orucho (30), who was diagnosed with SPS last year. Eugene, who is on the left of the picture, said: "For almost a year she was suffering these symptoms and we couldn't get any answers. I almost gave up. I wanted to connect with people, which I did on Facebook. I read about it, watched videos and decided I wanted to make it special for my mom and
everyone around the world by creating awareness of SPS. I pitched the idea to my friends who have been absolutely supportive in my hard times and they all collectively agreed to be part of it. I'm not sure how many people get the meaning behind the ribbons, but just having five of my good friends have them was a goal achieved. Hopefully they'll tell their friends and so on."
Outpouring of Support for Teen Kylie
Added May 2019: An appeal in support of long-suffering Albion teen Kylie Allen-Kulyk has generated an overwhelming response from well-wishers. As of May 4th, almost 1,000 e-cards had been sent to her hospital room in UPMC Hamot in her home State of Pennsylvania with messages of support and best wishes for the 18-year-old who has spent most of the year to date in hospital. Her uncle, Jeff Hannah, said: "I just want to thank everyone who answered my request to flood my niece's ICU room with e-cards. They are still coming in and the response has been unbelievable. The first day we hit over 150. We had over 700 come in just today (May 4th). This is amazing thank you sooo much - we can't believe the support we are receiving."
Added May 2019: John Fleming from Southbury, Connecticut, was pleasantly surprised when the nurses and care team at Praxair Cancer Center in Danbury, CT, helped him celebrate his 52nd anniversary on May 1st while in hospital for his IVIG treatment. He said: "My wonderful nurses and care team made it a special day for me on my birthday." And as he was getting ready for his treatment, he added: "Here we go again. A little different plan ... got my IVIG order changed from 40 GMs x 5 days to 50gms x 4 days. Gets it done one day quicker, but may pay dearly for it? The 'Migraine Rocket Machine' may launch? Test run the next few months? Hold on for the ride!"
We Will Not Be Beaten!
Added April 2019: Kathi Frizzell Rose and her husband, Jim, who was recently diagnosed with Parkinsons, together completed the Parkinsons Walk. The couple, from Jacksonville, Florida, did the 1 mile walk (not the 5k run). Said Kathi: "I decided to wear my SPS t-shirt which I had made up in BIG letters so people could read it and try to raise some awareness for all of us with SPS. Hey, there was a huge group of people so, what the heck, I decided to go for it! I came in last in 46 minutes, thought I was going to collapse, but somehow I made it! Jim and I are a team and take care of each other now. Some of our family showed up to surprise us. Now we just need something like this for SPS."
Added April 2019: Creative Zebra art work by Bess Barnett Theriault from Huntsville, Alabama in the USA. She said: "I used to make cards and a long time ago l made one for a friend, with a Zebra l designed. I was going through my stuff and came across it but unfortunately I had cut off the tail by mistake. I was trying to find a Zebra on the web for an idea of how to add a tail to mine - and saw this."
Added March 2019: An enlightening snippet from the classic US comedy the Golden Girls. It's a scenario many SPS-ers will immediately identify with - finding a doctor who understands the problem and can give a diagnosis. Here, the inimitable Dorothy (Bea Arthur) stands up for herself and confronts a hapless medic who has failed to identify her chronic illness. Hugely funny, hugely relevant to SPS-ers everywhere.
Added February 2019: Who says you can't have fun in the snow? After a heavy fall in LaCrescent in her home state of Minnesota, Joni Welda and friend enjoy some quiet bonding amid the white stuff. Said Joni: "I can’t play in it anymore but it sure was fun to sit in it! We got about a foot of snow here in southern Minnesnowta - who says you can’t have fun with SPS?"
Added February 2019: David Napier follows in the footsteps of Liz Blows (January 2019) going all colourful to mark Rare Disease Day on February 28, 2019 (February 27 in England) - a great way to "Show Your Rare".
Magic Moment at the Mayo
Added January 2019: A celebration in pictures of one of those rare moments of relief from the struggle that is life as an SPS sufferer: Sonia Chawdhary and Joni Welda recently met for the first time at the Mayo Clinic in Rochester, Minnesota. Sonia is from Campbell, California, and Joni from LaCrescent, Minnesota. It's quite clear from the amazing range of expressions on both their faces that it was a genuinely joyous encounter. It was described as a "mountain of confusing feelings" to which Sonia replied: "It was. The first thing we said to each other as we held each other’s shoulders, with shocked eyes, was Me: “You look normal!” Joni: “You do too!” And we kept repeating it between hugs, standing in the middle of the Mayo cafeteria. But now it feels like one of those things where an SPS-er can tell the other “you look normal,” but if a non-SPS-er were to say it... oh boy! I’m rolling my eyes in my head at the thought." She added: "After years of feeling like a Martian, correction, someone from Krypton (Superman and our hypersensitivity to sound), meeting another Kryptonian was crazy! I think we kept hugging, laughing, discussing our symptoms throughout lunch. Of course, lunch was over too soon *sigh* but now we have the map (SPS Map of the World) we’ll definitely find more of us and have more hugs and crazy laughter next time." So there you go - life isn't all bad all the time and moments like these (almost) make it seem worthwhile.
Patiently Helping the Cause
Added January 17, 2019: Liz Blows, from Beverley, England, and founder of the UK SPS Charity and Facebook group, attended Findacure's Patient Group Workshop in London. The Workshop was designed around the everyday impact of rare diseases together with ways and means of supporting the patient community.
LEFT: Posing with Findacure's banner.
BOTTOM LEFT: Findacure's top team.
BELOW: Unexpected picture of Liz on the front cover of Findacure's "Delegate" pack.