I recently returned from St.Louis, Missouri where I attended my first HFA Symposium. Our conference took place at the beautiful Hyatt in St.Louis under the arch. It was there, I was able to make connections with other bleeders by sharing our stories.
My husband was lucky enough to be able to join me and we were blessed to enjoy a wonderful blend of learning, advocating, and networking all while enjoying a mini-vacation to somewhere we had never been.
This years Symposium had a large focus on Blood Sisterhood, which is a portion of HFA, I'm truly passionate about. The number of women bleeders in this community is only growing and I believe we are on the brink of even more being diagnosed. Women are taking a stand and demanding better resources for a faster and smoother diagnosis as well as a realistic treatment plan. I was going into the weekend excited to networks with others and get females in the community what we deserved as patients and care givers.
THURSDAY MARCH 26
We landed in St.Louis on a Thursday night after traveling all day. We got up at 5:00am to catch the Airporter to the San Francisco airport and we didn't land in St. Louis until 6:30pm (with the time change).
When we landed I was pleasantly surprised to find a driver standing at the bottom of the staircase informing us he would be taking us directly to our hotel. He gave us a wonderful first impression of St. Louis as he gave us a tour of downtown. He gave us a quick history and showed us where all the hot spots were to dine and listen to music. I had an interview at 9p.m. that night, so I was anxious to get to the hotel, however looking back I was very grateful that he showed us around . . . it led to some great date nights with my hubby. But I'll get into that later.
Once I was all showered and ready for my interview I headed downstairs to meet up with someone that would not only be interviewing me, but someone I had learn to confide in. We had became friends through Facebook and both are Infusing Love bloggers as well as personal bloggers. Together we have compared ideas for better health care for women bleeders, ways to get diagnosed earlier, and the importance of a strong social network . . . . and now we were finally meeting in person. A couple hours of landing and I was already feeling so empowered and ready to make some changes.
We wrapped up our conversation around 10:30 p.m. and still being on California time and starving from a long day of traveling, my hubby and I decided to check out the local casino and get something to eat. We had an amazing time at the Lumiere and definitely stayed out too late, but felt is was all worth it. . . and a great way to start off the weekend.
It was there that I met a random women who had been diagnosed with Factor VIII after the delivery of her son. She had a horrible delivery where the Dr's couldn't figure out why she was bleeding so heavily and for so long and then finally tested her for hemophilia. She was actually shocked when I told her why we were in town and had never even heard of things like the HFA or NHF. So we ended the evening with my biggest concern about women with bleeding disorders being reiterated . . . They're getting diagnosed and then given no treatment plan! A great reminder that there are so many of us out there diagnosed (or Not) that need to have a better plan of attack if they're pregnant or in need of a surgical procedure.
FRIDAY MARCH 27
I started off Friday a.m. in the Exhibit Hall and Wellness Lounge. The Wellness lounge gave us the opportunity to meet up with a Yoga instructor, Personal Trainer and a Martial Arts instructor that were all there to be teach different techniques to be safe while staying active and healthy. They also had a spot to treat yourself to a relaxing massage.
The Exhibit Hall was filled with information on different pharmaceutical companies and other organizations involved with the bleeding disorder community. The information and free-bies that were offered, were obviously geared more towards hemophiliacs with treatment options. Unfortunately rare platelet disorders aren't a part of that group. As soon as the pharmaceutical companies heard I had a Platelet Storage Pool Disorder, their interest usually changed quickly. It was interesting to witness.
BUT, I still was glad I went. . . while walking around The Exhibit Hall I was able to reconnect with someone we had met at dinner Thursday night and one of my girls from California. . . as well as meet some amazing people. My husband and I were touched by a women's story that had lost her husband, two sons and father-in-law to hemophilia and/or Aids. A true hero in our community.
After that it was time to attend my first session- Be Involved. . Ask Questions. . Take Action! In this session HFA's Executive Director hosted a meet and greet with other staff members to teach us ways to get involved. This short introduction was followed by the Blood Sisters Welcome Session. During these two sessions I was able to finally connect with members of the community I had only communicated with on FB. I was able to spread awareness of our Women Bleeders FB group and talk about the importance of having safe places for women to talk and bounce ideas off on one another. We shared stories, expressed concerns and heard about other upcoming movements like The Women's Bleeding Disorder Coalition and new resources like the The Bleeders' Bill of Rights.
After lunch I went to the Advocacy:See it, Learn it, Do it! session. During this session I was able to learn ways to participate in advocacy on a more local level. We were challenged to come up with ways to write our own personal elevator speech, which taught us to describe our bleeding disorder to someone who knows nothing about it. We were encouraged to do this in less than 3 sentences. Unfortunately I had to cut the session short because I had a huge headache and I had to go lay down for a couple of hours. I've been doing my homework ever since and am still am trying to master the wording but this is what I came up with so far . . .
My 6 year old daughter and I live in the majestic Sonoma County in Northern California where we were diagnosed with a Platelet Storage Pool Disorder in 2011. We currently have no daily treatment plan and because of that, I have an elementary school student that isn't allowed to do a lot of the activities that her peers do. Storage Pool Disorders are a group of inherited disorders caused by abnormalities in the contents of granules (the contents of granules usually act as chemical signals to recruit more platelets to the site of an injury to stop the bleeding.) -Kari Peepe blogger, advocate, carrier and mother of a daughter with a storage pool disorder.
OBVIOUSLY I need to work on this more, but it was fun to get it started. I will definitely be critiquing this and continue to work on this and something for all us bleeders to think of.
After resting in the room for the duration of the evening my headache finally went away and we headed out for a taste of the local scene and headed down to FOX sports Midwest Live in Ballpark Village. Not only were we able to see the ever famous Cardinals Stadium. . .we happened upon a county concert.
As soon as we stepped out of the Taxi we could hear music playing. We quickly learned from the bouncers that every Friday night FOX sports Midwest Live hosts a small concert. . . that night Jerrod Niemann was playing. And although I would do pretty much anything to go to a county concert, we decided we didn't have extra money and headed into the Cardinals Nation Restaurant, which was in ears distance of the concert.
Once we were done eating and ready to head back to the hotel, we started towards the door and were surprised by the bouncer telling us he would let us into the concert now for free. . .We got to walk in on the last 45 minutes of the concert and ended the evening in pure bliss. Anybody who doesn't know me well, should know I listen to country music ALL the time and country concerts are what I live for.
SATURDAY MARCH 28
Saturday a.m. I woke up early and headed down to the Industry Breakfast:Your Journey to Joint Health Through Exercise. We learned about how joints work, how they get damaged and ways to exercise and strengthen them. After breakfast I headed to the Connecting with Social Media Breakout session. This was an interesting session where I was able to learn how to navigate social media in a safe and productive way. HFA's communications director and communications & advocacy coordinator led a discussion on ways in which to network and raise awareness while protecting yourself and your personal information. This session really intrigued me and I plan on writing a blog that goes more in depth on this.
After the break out session I headed over to On the Horizon, a very informative session with the leading physicians and researchers of our community working on treatments, clinical trials and eventual cures for the bleeding disorder community. All though most of this was based on information for hemophiliacs it was very exciting to hear whats being researched and I can only hope the same amount of research will soon be happening for those of us with storage pool disorders.
After sitting down all morning, my hubby and I decided to take a walk and go find something to eat for lunch. We were blessed to happen upon local hot spot the Broadway Oyster Bar. As we approached the bar we could tell we happened upon a gold mind. As we entered we sat down to a
local band rocking it out on stage. By the time we left there was a line out the door and a 45 minute wait. (Just a normal Saturday, claimed all the locals). We tried our first Lobster Po'Boy and caught up on the local scene, all while meeting some amazing people. With that said I must say, everyone in St. Louis was wonderful. They were so nice, hospitable, and always willing to spark up a conversation. I was able to share our story with so many different people over the weekend and the locals were no exception. This was one of my favorite moments looking back. . a quick getaway, but so much fun.
I ended Saturday with Joint Health for Women and the two Blood Sisterhood Tracks. The first Blood Sisterhood track was Communicating & Advocacy Strategies for Women with Bleeding Disorders. We learned ways to communicate with our health care providers as well as our co-workers. During the Wrap-Up Blood Sisterhood tracks we discussed problems we've encountered with healthcare providers, ways in which to improve that and were able to brainstorm as a group about our needs as women in the bleeding disorder community.
We ended our trip with a special present for my hubby. . .Tickets to Supercross. We headed down to the stadium to watch our favorite riders race for the finish line Saturday night and it was a night I'm sure we will never forget.
SUNDAY MARCH 29
Sunday morning I felt like the trip was too short, yet I was emotionally exhausted and ready to go home and see my babies. There were a lot of people even within the bleeding disorder community that had never even heard of a Platelet Storage Pool Disorder, let alone understand anything that we are going through, so I spent so much of the weekend telling our story and it left me feeling emotionally inflated. But, I was presently surprised to have one last chat with one of my bleeder buddies from Texas as we closed up the trip. We enjoyed reminiscing about the weekend, brainstorming for future movements and promising future conversations.
The flight home was the perfect ending, as the California crew took up the back rows of the airplane to reminisce and sleep our jet lag away.
I would be lying if I said that I came back from St.Louis with a wealth of new information. I have Platelet Storage Pool Disorder and there just isn't much new information out there. But what I did come back with, is the hope for some change in the future. It was amazing to see how far the Hemophilia community has come and I have faith that research and medication is on the horizon for the rare bleeder community too. I thank Hemophilia Federation of America for all that they did to make this happen and look forward to next year.
My husband was lucky enough to be able to join me and we were blessed to enjoy a wonderful blend of learning, advocating, and networking all while enjoying a mini-vacation to somewhere we had never been.
This years Symposium had a large focus on Blood Sisterhood, which is a portion of HFA, I'm truly passionate about. The number of women bleeders in this community is only growing and I believe we are on the brink of even more being diagnosed. Women are taking a stand and demanding better resources for a faster and smoother diagnosis as well as a realistic treatment plan. I was going into the weekend excited to networks with others and get females in the community what we deserved as patients and care givers.
THURSDAY MARCH 26
We landed in St.Louis on a Thursday night after traveling all day. We got up at 5:00am to catch the Airporter to the San Francisco airport and we didn't land in St. Louis until 6:30pm (with the time change).When we landed I was pleasantly surprised to find a driver standing at the bottom of the staircase informing us he would be taking us directly to our hotel. He gave us a wonderful first impression of St. Louis as he gave us a tour of downtown. He gave us a quick history and showed us where all the hot spots were to dine and listen to music. I had an interview at 9p.m. that night, so I was anxious to get to the hotel, however looking back I was very grateful that he showed us around . . . it led to some great date nights with my hubby. But I'll get into that later.
Once I was all showered and ready for my interview I headed downstairs to meet up with someone that would not only be interviewing me, but someone I had learn to confide in. We had became friends through Facebook and both are Infusing Love bloggers as well as personal bloggers. Together we have compared ideas for better health care for women bleeders, ways to get diagnosed earlier, and the importance of a strong social network . . . . and now we were finally meeting in person. A couple hours of landing and I was already feeling so empowered and ready to make some changes.
We wrapped up our conversation around 10:30 p.m. and still being on California time and starving from a long day of traveling, my hubby and I decided to check out the local casino and get something to eat. We had an amazing time at the Lumiere and definitely stayed out too late, but felt is was all worth it. . . and a great way to start off the weekend.
It was there that I met a random women who had been diagnosed with Factor VIII after the delivery of her son. She had a horrible delivery where the Dr's couldn't figure out why she was bleeding so heavily and for so long and then finally tested her for hemophilia. She was actually shocked when I told her why we were in town and had never even heard of things like the HFA or NHF. So we ended the evening with my biggest concern about women with bleeding disorders being reiterated . . . They're getting diagnosed and then given no treatment plan! A great reminder that there are so many of us out there diagnosed (or Not) that need to have a better plan of attack if they're pregnant or in need of a surgical procedure.
FRIDAY MARCH 27
I started off Friday a.m. in the Exhibit Hall and Wellness Lounge. The Wellness lounge gave us the opportunity to meet up with a Yoga instructor, Personal Trainer and a Martial Arts instructor that were all there to be teach different techniques to be safe while staying active and healthy. They also had a spot to treat yourself to a relaxing massage.
The Exhibit Hall was filled with information on different pharmaceutical companies and other organizations involved with the bleeding disorder community. The information and free-bies that were offered, were obviously geared more towards hemophiliacs with treatment options. Unfortunately rare platelet disorders aren't a part of that group. As soon as the pharmaceutical companies heard I had a Platelet Storage Pool Disorder, their interest usually changed quickly. It was interesting to witness.
BUT, I still was glad I went. . . while walking around The Exhibit Hall I was able to reconnect with someone we had met at dinner Thursday night and one of my girls from California. . . as well as meet some amazing people. My husband and I were touched by a women's story that had lost her husband, two sons and father-in-law to hemophilia and/or Aids. A true hero in our community.
After that it was time to attend my first session- Be Involved. . Ask Questions. . Take Action! In this session HFA's Executive Director hosted a meet and greet with other staff members to teach us ways to get involved. This short introduction was followed by the Blood Sisters Welcome Session. During these two sessions I was able to finally connect with members of the community I had only communicated with on FB. I was able to spread awareness of our Women Bleeders FB group and talk about the importance of having safe places for women to talk and bounce ideas off on one another. We shared stories, expressed concerns and heard about other upcoming movements like The Women's Bleeding Disorder Coalition and new resources like the The Bleeders' Bill of Rights.
After lunch I went to the Advocacy:See it, Learn it, Do it! session. During this session I was able to learn ways to participate in advocacy on a more local level. We were challenged to come up with ways to write our own personal elevator speech, which taught us to describe our bleeding disorder to someone who knows nothing about it. We were encouraged to do this in less than 3 sentences. Unfortunately I had to cut the session short because I had a huge headache and I had to go lay down for a couple of hours. I've been doing my homework ever since and am still am trying to master the wording but this is what I came up with so far . . .
My 6 year old daughter and I live in the majestic Sonoma County in Northern California where we were diagnosed with a Platelet Storage Pool Disorder in 2011. We currently have no daily treatment plan and because of that, I have an elementary school student that isn't allowed to do a lot of the activities that her peers do. Storage Pool Disorders are a group of inherited disorders caused by abnormalities in the contents of granules (the contents of granules usually act as chemical signals to recruit more platelets to the site of an injury to stop the bleeding.) -Kari Peepe blogger, advocate, carrier and mother of a daughter with a storage pool disorder.
OBVIOUSLY I need to work on this more, but it was fun to get it started. I will definitely be critiquing this and continue to work on this and something for all us bleeders to think of.
 |
| Jerrod Neimann concert |
Once we were done eating and ready to head back to the hotel, we started towards the door and were surprised by the bouncer telling us he would let us into the concert now for free. . .We got to walk in on the last 45 minutes of the concert and ended the evening in pure bliss. Anybody who doesn't know me well, should know I listen to country music ALL the time and country concerts are what I live for.
SATURDAY MARCH 28
Saturday a.m. I woke up early and headed down to the Industry Breakfast:Your Journey to Joint Health Through Exercise. We learned about how joints work, how they get damaged and ways to exercise and strengthen them. After breakfast I headed to the Connecting with Social Media Breakout session. This was an interesting session where I was able to learn how to navigate social media in a safe and productive way. HFA's communications director and communications & advocacy coordinator led a discussion on ways in which to network and raise awareness while protecting yourself and your personal information. This session really intrigued me and I plan on writing a blog that goes more in depth on this.
After the break out session I headed over to On the Horizon, a very informative session with the leading physicians and researchers of our community working on treatments, clinical trials and eventual cures for the bleeding disorder community. All though most of this was based on information for hemophiliacs it was very exciting to hear whats being researched and I can only hope the same amount of research will soon be happening for those of us with storage pool disorders.
After sitting down all morning, my hubby and I decided to take a walk and go find something to eat for lunch. We were blessed to happen upon local hot spot the Broadway Oyster Bar. As we approached the bar we could tell we happened upon a gold mind. As we entered we sat down to a
 |
| Raising awareness: Shared our story and left my card! |
I ended Saturday with Joint Health for Women and the two Blood Sisterhood Tracks. The first Blood Sisterhood track was Communicating & Advocacy Strategies for Women with Bleeding Disorders. We learned ways to communicate with our health care providers as well as our co-workers. During the Wrap-Up Blood Sisterhood tracks we discussed problems we've encountered with healthcare providers, ways in which to improve that and were able to brainstorm as a group about our needs as women in the bleeding disorder community.
We ended our trip with a special present for my hubby. . .Tickets to Supercross. We headed down to the stadium to watch our favorite riders race for the finish line Saturday night and it was a night I'm sure we will never forget.
SUNDAY MARCH 29
 |
 |
| My HFNC ladies |
I would be lying if I said that I came back from St.Louis with a wealth of new information. I have Platelet Storage Pool Disorder and there just isn't much new information out there. But what I did come back with, is the hope for some change in the future. It was amazing to see how far the Hemophilia community has come and I have faith that research and medication is on the horizon for the rare bleeder community too. I thank Hemophilia Federation of America for all that they did to make this happen and look forward to next year.
Written by,
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
pspdaware@gmail.com
www.pspdaware.com
For more stories about Bleeding Disorder Events I've attended please check out . . .
- http://atouchofscarlett.blogspot.com/2016/01/to-all-that-helped-take-care-of-my.html (HFNC Family Camp 2016)
- http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ (Fundraising/Walk 2015)
- http://atouchofscarlett.blogspot.com/2015/04/hfa-symposium-2015-stlouis.html (HFA Symposium 2015)
- http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven/ (HFNC Family Camp 2015)
- http://atouchofscarlett.blogspot.com/2015/12/tis-season-not-just-holiday-party.html (HFNC Holiday party 2015)
- http://atouchofscarlett.blogspot.com/2016/04/hfnc-crab-feed.html (HFNC Crab feed 2016)
Written by,
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
pspdaware@gmail.com
www.pspdaware.com
For more stories about Bleeding Disorder Events I've attended please check out . . .
- http://atouchofscarlett.blogspot.com/2016/01/to-all-that-helped-take-care-of-my.html (HFNC Family Camp 2016)
- http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ (Fundraising/Walk 2015)
- http://atouchofscarlett.blogspot.com/2015/04/hfa-symposium-2015-stlouis.html (HFA Symposium 2015)
- http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven/ (HFNC Family Camp 2015)
- http://atouchofscarlett.blogspot.com/2015/12/tis-season-not-just-holiday-party.html (HFNC Holiday party 2015)
- http://atouchofscarlett.blogspot.com/2016/04/hfnc-crab-feed.html (HFNC Crab feed 2016)
Comments