Hi Kate, So good to see you again! I hope that you and your loved ones are coping well w/ the disruptions caused by the pandemic. Interesting and informative video. I hope there are more to come in the near future.
Hi, I was diagnosed in 2012 with segmental NF. I've been trying to find a clinical trial in Northern California to participate in. Hoping to help someone learn more about the lesser known NF.
Thank you so much I was diagnosed with nf1 at 3 months old I'm now 58 had many tumours removed off my feet and toes nowhere else Had blood test but said it was negative for nf1 but all the tumours came back as nf1 Have not had a lot of problems since I was 16 but someone told me about mosiac nf1 which now makes sense as to why blood test came back negative but the tumours were positive
How worried should I be if I have pain with my tumors? It is not bad enough to take meds as it does not last very long. But is becoming more frequent. I do have plexiform tumors
Hi Jo, I always recommend speaking with your NF provider about new, worsening, or changes to pain. It may not be a cause for concern, but it is an important conversation to have with your doctors.
Thank you for these, Kate. I was diagnosed 40 years ago by Dr. Carey and I have spoken to you before about finding a provider. I am still on the hunt for someone that specializes but I have seen people who have dealt with some patients and faces of NF now. My question is this. My CALS are very specific on my abdomen. I have them bilaterally under my arms and so forth, but I have a very high expression on my abdomen, only on the left side. It looks like someone covered me at my midline and sprayed me with a paint brush. They literally don't cross my midline at all. I suffered many early juvenile issues like precocious puberty, but none of my five children got NF. Could this be because the mutation happened at a different time in my development?
Hello, thank you for your question. Many people living with NF1 do have a fairly mild presentation and are not affected by the more serious health complications. The exact numbers for this are not known but we estimate approximately 50% of those with NF1 are more mildly affected.
@@kbm124 yeah... tons of pain... but I've had 43 surgeries and was paralyzed from the waist down for almost 2 years... aaaand, have had to learn to walk 7 times after that if it makes any sense... just a lot... looking for SOMETHING... ANYTHING... Voodoo if It Would Help w The Pain... Sighhh
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Hi Kate, So good to see you again! I hope that you and your loved ones are coping well w/ the disruptions caused by the pandemic. Interesting and informative video. I hope there are more to come in the near future.
Great to you have a video again. These are two things I don’t know about
Hi, I was diagnosed in 2012 with segmental NF. I've been trying to find a clinical trial in Northern California to participate in. Hoping to help someone learn more about the lesser known NF.
Thank you so much I was diagnosed with nf1 at 3 months old I'm now 58 had many tumours removed off my feet and toes nowhere else
Had blood test but said it was negative for nf1 but all the tumours came back as nf1
Have not had a lot of problems since I was 16 but someone told me about mosiac nf1 which now makes sense as to why blood test came back negative but the tumours were positive
Hi there, would you say you have a mild case of segmental nf1?
How worried should I be if I have pain with my tumors? It is not bad enough to take meds as it does not last very long. But is becoming more frequent. I do have plexiform tumors
Hi Jo, I always recommend speaking with your NF provider about new, worsening, or changes to pain. It may not be a cause for concern, but it is an important conversation to have with your doctors.
Thank you for these, Kate. I was diagnosed 40 years ago by Dr. Carey and I have spoken to you before about finding a provider. I am still on the hunt for someone that specializes but I have seen people who have dealt with some patients and faces of NF now. My question is this. My CALS are very specific on my abdomen. I have them bilaterally under my arms and so forth, but I have a very high expression on my abdomen, only on the left side. It looks like someone covered me at my midline and sprayed me with a paint brush. They literally don't cross my midline at all. I suffered many early juvenile issues like precocious puberty, but none of my five children got NF. Could this be because the mutation happened at a different time in my development?
Hi Kristin, thank you for your question. From your description, exploring whether you might have segmental NF1 is quite reasonable.
Also with NF1 in general, do you see more mild cases than severe, are they somewhat equal or typically pretty severe.
Hello, thank you for your question. Many people living with NF1 do have a fairly mild presentation and are not affected by the more serious health complications. The exact numbers for this are not known but we estimate approximately 50% of those with NF1 are more mildly affected.
also how fo you know witch one you have is this with a blood test
So are segmental and mosaic NF1 cases typically mild?
This will vary from person to the next and would be a good question to discuss with your provider if you believe you may have segmental NF1.
so if you have it all over. whitch one is this
I have mosaic nf2
Hi there, do you have many symptoms ?
@@kbm124 yeah... tons of pain... but I've had 43 surgeries and was paralyzed from the waist down for almost 2 years... aaaand, have had to learn to walk 7 times after that if it makes any sense... just a lot... looking for SOMETHING... ANYTHING... Voodoo if It Would Help w The Pain... Sighhh