Hello:
I just wanted to put something out there I was curious about. I have gone to a few of these symposiums which are usually held at hospitals. I went to one in the bay area a few years back and then went to one today in Madera.
Usually, it seems like a lot of the people who are running or either participating in these things are people who do not have NF themselves or people who are the parents of children with NF. While I understand their situation, it sort of puzzles me why more of these workshops do not use people with NF directly. For the most part - I felt pretty welcomed, there were some nice people there. However, there were a few others who - I'm not sure if they have a problem with men, or if they just are insensitive to others with the diease, who were "off putting". I had one person in charge today who told us all about these literature tables and when I went to peruse one of the folders, basically told me to go away in the other room.
I know there were quite a few people from the Central Valley who have this condition and were present. I would have stayed some more to speak to them but honestly, (I don't mean to bitch) one of the persons from the cafeteria seemed to have a problem with us NFers. She was setting up the coffee in the room and was basically pretty cold to the patients. I've learned to develop some thicker skin (and i"m sure most of you have), but when you have to deal with people's insensitivity (please see the post about the woman in the bookstore) it can become frustrating.
Are any of the people on this site working in the medical field or some sort of research and also victims of this condition? Are any of you working on panels or boards or such? I can sympathise with the parents only group but those of us who have had it, especially when it is a generational situation, have a more vested interest and a better understanding of this condition.
For those of you who are parents only, please try and understand this.
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NF Symposiums - is anyone else frustrated?
- By wpcooper
- Posted November 7, 2009 at 8:09 pm · 5 replies
- In Living with NF1
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- By Kierstysmom
- Posted November 7, 2009 at 8:51 pm
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Wow. I'm sorry they treated you like that. I am a parent and plan to go to my first symposium next Saturday. I new to the NF community and am hoping to meet other parents, medical professionals, and most importantly adults with NF1.
I certainly hope this is not the tone in San Antonio.
- By sweetiecat
- Posted November 7, 2009 at 11:22 pm
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Thanks for sharing your story. I would like to attend one of those. How do you find out about them? You're right we do develop thick skin. We have to!
- By JaxonsMom
- Posted November 8, 2009 at 10:47 pm
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I am so sorry the meeting wasn't a positive experience! I was sad that I didn't get a chance to talk to everyone. By the time I finished straightening up the kids club, most everyone had left.
As for the person with the coffee - that would have been the hospital's catering department. They should have politely refreshed the table - I don't think smiling would have been too much to ask. She scowled at me too! Do you think this should be mentioned to the head of the department?
And, I am so sorry that you weren't encouraged to find articles. I wonder who it was who sent you back to another room. Was it during the time they were trying to take the group photo?
You are right - those running it were parents of NF patients. And, we are mainly mothers. My husband, Deb's, and April's all had to work on Saturday. Usually, they are right there by our side. Men are certainly welcome!
I wish we had more adults with NF involved. We have been unable to find any Central Cal NF patients willing to take the lead on projects - until Saturday. One of the attendees will be hosting an activity this spring - I am SO excited!!!
If you are on our mailing list you have probably seen our pleas for help. We are an all volunteer group. Those with NF and those with children with NF who get involved are generally those who have been hit pretty hard by NF. We need all the help we can get. We tend not to have much "free" time because of the excessive number of doctor's appointments and related stress. I've wanted to do so much more but with the glioma, endocrine, and vision stress, I've had to focus on that more than advocacy.
But then chemo ended! So we booked a room and started planning a meeting! The postcards were mailed, physicians contacted, etc. Then, in October we got shocking MRI results. The tumor wasn't dead after all - it is growing deeper into his brain. Wednesday - just four days ago - Jaxon had another port a cath placed and went through hell. Very literally the worst chemo experience I've ever seen. And, he's on daily treatments too so his little body doesn't get to bounce back. As soon as he stops vomiting, more meds are added to his system. Jaxon has started asking questions about if dying hurts and who will be there to greet him in heaven. Giving up isn't an option. So, we move forward.
Gratefully kind NF moms came to our rescue. They drove from Northern and Southern California to help us through a day that April and I couldn't have handled alone. I am sorry if any of us had weird vibes. It was all we could do to get through the day without crying.
Maybe if Bev had been able to come the adult-with-NF perspective would have been better expressed. She spoke at both our recent Northern and Southern CA symposiums - and would have done far better at explaining the political process. She represented California in DC this year.
I hope that you give us another chance. We've never had someone tell us that we don't understand life with NF so we could really use your input. And the opinions of anyone else who was there.
Send me your suggestions by email staffwriter@nfcalifornia.org
- By RSERDA
- Posted November 9, 2009 at 8:59 am
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I live in Michigan. Have attended two Symposiums. One in Ann Arbor a few years ago and just recently in IL. The West Michigan NF Group is wonderful. We have two ladies that do alot of work. One has a NF1 son and the other has a NF2 son, so we get alot of information on both. Symposiums are a great opportunity to learn any new information out there and meet and talk to other families.
- By kiddo822
- Posted November 10, 2009 at 12:27 am
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FYI for anyone in NC. There's one at UNC this Saturday 11/14. I have not been to one, and i think this is the first that they've held at UNC. Dr. Greenwood, whom I've seen for 20+ years is heading it up. He's a Neurologist who specializes in NF at UNC. Anyone around here should try to get into see him if they need a doc. He works out of pediatrics, but will see anyone.
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