Donna Lee
  • Female
  • United States
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  • Brett B.
  • Brett Billmeyer
 

Donna Lee's Page

Latest Activity

Donna Lee left a comment for Tatyana
"Part 2- Regarding your question about waiting to start Kanuma, this is not an easy question to answer. Even if I knew the mutations, I would be hesitant to gamble with his health. There was a baby reported who had a stroke at age two…"
Oct 23
Donna Lee left a comment for Tatyana
"Dear Tatyana- it must be so frustrating that most doctors do not know CESD very well if at all. I will do my best to answer your questions, but it could help to know more about Vanya. Did Vanya have genetic testing or only the enzyme test?…"
Oct 23
Donna Lee left a comment for Tatyana
"Hi Tatyana- Welcome to LAL-D Aware.  I'm a genetic counselor in the USA, and I worked with enzyme replacement therapy for several lysosomal storage conditions, including CESD.  We followed two patients who received Kanuma for over a…"
Oct 20
Donna Lee replied to Lisa G's discussion Canada
"Hello Lisa- I am so sorry that it has taken this long to respond.  I just saw this post (a bit late)! I hope that you found out about other people with LAL-D in Canada. I do not know any personally, but I do know that there is a paper from the…"
Jan 18
Donna Lee replied to Lisa Diaz's discussion Searching for information
"Hi Rebecca- I just saw your post, so please forgive the delayed reply. We've had patients with ports for years.  They don't seem too bothersome. As for the scheduling, some hospitals tend to be big, slow and inflexible, even when the…"
Jan 11
Donna Lee replied to Lisa G's discussion How long are your infusions?
"Hi Lisa- Please forgive the delayed response. We are updating this site and your question was not easy to find!  By now you probably already know that Kanuma infusions are given over about 2 hours.  However, depending on the infusion…"
Jan 11
Donna Lee posted a video
May 6, 2016
Profile IconLAL Solace Patient Community now has videos
May 6, 2016
Donna Lee replied to Dorothy's discussion Biopsy Results
"Hi Dorothy- welcome to LAL Solace! I'm Donna Bernstein, a genetic counselor. I'm also involved with LAL Solace and saw your message. Please feel free to contact me at 917-306-8312 if you would like to discuss anything regarding genetic…"
Feb 29, 2016
Donna Lee replied to Rebecca Trendy's discussion Introducing my family
"I'm just writing to welcome you to our group. I'm so glad to hear that things are going so well now!"
Feb 2, 2016
Sally Butler and Donna Lee are now friends
Apr 24, 2015
Donna Lee left a comment for Jasmine Purvis
"Hi Jasmine- Welcome to our LAL-D (CESD and Wolman Site)! I'm Donna Lee and I am involved with the website and I'm a Genetic Counselor, so please let me know if you would like any information about our site or LAL-D. I just sent you a…"
Apr 23, 2015
Donna Lee updated their profile
Jul 29, 2014
Donna Lee and Brett B. are now friends
Mar 6, 2014

Profile Information

What brings you to LAL Solace?
Education, Sharing
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Patient

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