Hi everyone Deirdre, thank you for starting this wonderful discussion group, now with 30 members (end of July). I myself have learnt such a lot. I think we're all surprised to sense that younger people are being diagnosed with T-LGL, contrary to what we've heard about it as an older person's illness. I've read the discussion threads carefully and recently decided to make notes in a spreadsheet: this summary info about the patients themselves might be of interest... * -30 members (7 in direct contact with Dr Loughran) * -19 members are patients, 11 are family/friends * -patient gender: 11 males, 9 females, 10 not specified * -patient age: 4 in their 20s, 6 in 30s, 6 in 40s, 4 in 50s, 2 over 60, 8 not specified * -location: 26 USA, 1 Australia, 1 NZ, 2 Canada * -8 mention fatigue/tiredness, 4 mention joint pain, 3 mention they have had transfusions, 1 with R.A. * -Earliest diagnosis: 1998 * -Methotrexate treatment - mentioned by 7 If others are interested, I can share updated summary info here from time to time. All the best everyone Karen from New Zealand

Very interesting! Thanks and keep it up!

Hi everyone, my daughter watched the show THe Doctors and they had a md on that was talking about a new expermental drug that makes t-cells more active to get rid of tumors it is called ipoliumab, and is being tested by FDA , Was wondering if anyone heard about it and if it work with LGL MaMa C

Thanks for your work Karen-I am very interested. kindly, nlbl

Hi there, I somehow missed Boxall5's stats summary (thankyou for doing that) I wonder if we can see how many people have allergies and how many have taken over the counter antihistamines and how frequently. I noticed it a couple of times in other posts and my son also suffers from allergies and takes OTC meds daily (as I know a few millions without LGL do). Still would be interested to know. Ryan has an appointment with his specialist on Monday and I will ask about the ipoliumab although his doctor is not a specialist in LGL. Will let you all know if I learn anything.

And now we have 43 members! (25 Sept) Incidentally, please noone feel threatened by this summary info! It is entirely gleaned from informal posts we've all shared here. Maybe any trends are due to our profile as internet users? ...I'm not sure it's at all significant, but it's interesting! WendyB, I have scanned through again for mention of allergies - see below. Here is the latest (25 Sept): * -43 members (10 in direct contact with Dr Loughran) * -26 members are patients, 17 are family/friends * -patient gender: 14 males, 13 females, 16 not specified * -patient age: 5 in their 20s, 9 in 30s, 6 in 40s, 8 in 50s, 3 over 60, 12 not specified * -location: 37 USA, 1 Australia, 1 NZ, 2 Canada, 1 Belgium, 1 UK * -14 mention fatigue/tiredness, 7 mention joint pain, 3 mention they have had transfusions (2 with iron overload), 2 with R.A., 5 have allergies (3 take over-the-counter medications), 6 mention canker mouth sores/ulcers * -Earliest diagnosis: 1998 * -Having/had Methotrexate treatment – mentioned by 13 Best wishes everyone - Karen

p=. *RareShare summary info 18 November* -55 members (excludes 1 member who left) -15 in direct contact with Dr Loughran -37 members are patients, 18 are family/friends -patient gender: 18 males, 23 females, 14 not specified -patient age: 5 in their 20s, 10 in 30s, 9 in 40s, 13 in 50s, 5 over 60, 13 not specified -location: 47 USA, 1 Australia, 2 NZ, 2 Canada, 1 Belgium, 1 UK, 1 France -18 mention fatigue/tiredness, 11 mention joint pain, 4 mention they have had transfusions (2 with iron overload), 3 with R.A., 5 have allergies (3 take over-the-counter medications), 8 mention mouth sores/ulcers, 10 mention brain fog -Earliest diagnosis: 1998 -Having/had Methotrexate treatment – mentioned by 16 I am priviledged to have made personal contact with 2 RareShare members in the last 3-4 weeks! I've emailed Ducky who knows my sister in Florida, and have met up with Joanne in Auckland. Amazing and uplifting! All thanks to RareShare. Best wishes everyone – Karen from NZ

Thank you, I am sorry to say I have missed a lot of the posts here, and not enough hours in the day to go back and reply to those needed. Just in case I did not give my complete history: F, 52, DX Nov. 2007, no RA, Hep C, Hypothyroid and assorted problems, pain, fatigue, sweats. Low ANC and platlets. Live in Florida but Dr L is my primary. Tried Cyclorsporine and Methotrexate, both with little to no results. Believe I have had LGL most of my life, atleast 30+ years. It makes sense that younger people are now being DX'ed. I still have had to school all of my other Doctors because they have never heard of it. Don't know what I would have done if I had'nt found the yahoo messageboard. Very important that we have places to vent, compare and discover. Feel free to e-mail me if you want, tjteresam@yahoo.com Wish we could all get together and do a benefit for research. Hope you all have a great Thanksgiving and stay well.

Hi everyone, Our latest *community profile as at 29 Jan. 2011*... -72 members -16 in direct contact with Dr Loughran -50 are patients, 22~family/friends -patient gender: 20 males, 31 females, 21 not given -patient age: 5 in their 20s, 10~30s, 11~40s, 17~50s, 10~60+, 19 not given -location: 63~USA, 2~New Zealand, 2~Australia, 2~Canada, 1~Belgium, 1~UK, 1~France -22 mention fatigue/tiredness, 15~joint pain, 12~brain fog, 9~mouth sores/ulcers, 6~allergies (3 take over-the-counter medications), 4~have had transfusions (2 with iron overload), 4 have R.A. -Earliest diagnosis: 1998 -18 having/had Methotrexate treatment Happy New Year & best wishes everyone Karen from New Zealand

Thank You, Karen. I am sure we all appreciate what you are doing here. TJTeresa

Hi everyone *On 11 May 2011*, LGL Rareshare has… -89 members -20 in direct contact with Dr Loughran -65 are patients, 24~family/friends -patient gender: 23 males, 34 females, 32 not given -patient age: 5 in their 20s, 12~30s, 12~40s, 22~50s, 12~60+, 26 not given -location: 78~USA, 2~New Zealand, 2~Australia, 2~Canada, 2~UK, 1~Belgium, 1~France, 1~Hungary -26 mention fatigue/tiredness, 17~joint pain, 15~brain fog, 10~mouth sores/ulcers, 6~allergies (3 take over-the-counter medications), 6~have had transfusions (2 with iron overload), 4 have R.A. -Earliest diagnosis: 1998 -2 mention having NK LGL -20 having/had Methotrexate treatment Cheers, Karen

The information you have summarized is really interesting! Any chance we could all respond to the same questions to get more uniform information? I would also be interested in ethnicity/family background as I've read that being Jewish and from Russia is also a link to this disease. Thanks again for doing this.

Hi everyone Sorry not to have updated this for almost a year! My son is doing well at the moment and I haven't been checking the site, but I will update the summary info in the next few days. cheers, Karen from NZ

Karen From NZ, That is great news about your son. I am so happy for you! To Sschwartz: I have Italian/Irish American heritage. Hope this helps.

Hi everyone Our LGL Rareshare community has grown! Hopefully, we're linking up better & it doesn't mean more incidence of LGL. On 29 April 2012, our group has: -135 members -25 in direct contact with Dr Loughran -96 are patients, 39~family/friends -patient gender: 39 males, 46 females, 50 not given -patient age: 5 in their 20s, 17~30s, 18~40s, 29~50s, 24~60+, 42~not given -location: 114~USA, 4~Australia, 3~Canada, 3~Italy, 3~New Zealand, 2~UK, 1~Belgium, 1~Botwsana, 1~France, 1~Hungary, 1~Spain, 1~Turkey -32 mention fatigue/tiredness, 17~joint pain, 16~brain fog, 12~mouth sores/ulcers, 10~sweating, 7~allergies, 6~have had transfusions (2 with iron overload), 5 have R.A. -Earliest diagnosis: 1998 -3 mention having NK LGL (2 could be same person) -24 having/had Methotrexate treatment (9~15mg/week or more) *Message for PaulJean*: I came across your profile while I was updating this, but I don't think you've posted a message yet. Welcome to Rareshare. Where in New Zealand are you from? I'm from Wellington, and my son's in Auckland. If you want to get in touch, please let me know. Cheers, Karen