Marna

Marnaasked the question: Joint Pain

Does anyone on Sirolimus experience joint pain and if so what is it like? I have been having pain in my left foot that comes on goes. Trying to figure out if it from Sirolimus or something else.

4 hours ago

Marna

Marnareceived the badge Getting started

Earned the Getting started badge!
ThesBelindarJessicaand 324 others also received the badge Thesand 326 others also received the badge

4 hours ago

maria pearson

maria pearson created the event LAM Education Meeting in Salt Lake City, Utah

LAM Liaison, Lynnette Weese is planning a LAM Education meeting scheduled Wednesday, December 14. Women with LAM, family and friends are all welcome to join us! 

LAM Clinic Director, Robert Paine III, MD, will join us to answer all of our questions and William Pazos, Coordinator of Pulmonary Rehab, will also join us to give us tips on correct breathing techniques and exercises to keep our lungs healthy and strong.

The meeting is free and light refreshments will be served.

2 days ago

    maria pearson

    maria pearson created the event LAM Education Meeting in San Diego

    LAM Liaison, Patricia Ortiz, is planning an afternoon of LAM education where women with LAM, family and friends can gather to connect and learn. University of California (San Diego) LAM Clinic Director, Kamyar Afshar, DO, will present. Everyone is welcome! 

    6 days ago

      maria pearson

      maria pearson created the event LAM EducationMeeting and LAMposium Planning Meeting, Washington, DC

      Join us on Tuesday, December 13 at 5:00 pm at the National Institutes of Health (NIH) for an evening of LAM education and a kick-off planning session for LAMposium DC. 



      Dr. Joel Moss will begin the evening with his Tuesday night LAM Q&A session followed by a LAMposium DC kick-off meeting with The LAM Foundation staff. Receive first-hand insight and up-to-date details for the event and learn how to get involved to create a memorable, action-packed weekend for the LAM Community next June. Even if you cannot attend the NIH meeting in person, you can still take part.  

      1 week ago

      • JPipitoLAMposium in DC!! That makes me so excited for it is only a couple hour drive for me :) 5 days ago

      maria pearson

      maria pearson created the event '90's Prom to Benefit The LAM Foundation, Nashville, TN

      DRESS IN YOUR 90'S BEST AND DANCE THE NIGHT AWAY FOR A GOOD CAUSE


      90's Prom to Benefit The LAM Foundation

      DATE: Sunday, January 15, 2017 

      TIME: 7:00 PM

      PLACE: Tin Roof Nashville

      ADDRESS: 1516 Demonbreun Street

      Nashville, TN

      2 weeks ago

        maria pearson

        maria pearson created the event Breath of Hope Gala

        SAVE THE DATE!



        Breath of Hope Gala

        Hyatt Regency Washington Capitol Hill

        400 New Jersey Avenue, NW

        Washington, DC 20001

        3 weeks ago

          maria pearson

          maria pearson created the event International Research Conference on LAM/TSC and LAMposium DC

          SAVE THE DATE!


          The International Research Conference on LAM and TSC and LAMposium DC

          Hyatt Regency Washington Capitol Hill

          400 New Jersey, Ave.  NW

          Washington, DC 20001

          3 weeks ago

            maria pearson

            maria pearson created the event International Research Conference on LAM/TSC and LAMposium DC

            SAVE THE DATE!



            The International Research Conference on LAM and TSC and LAMposium DC

            Hyatt Regency Washington Capitol Hill

            400 New Jersey, Ave.  NW

            Washington, DC 20001

            3 weeks ago

              maria pearson

              maria pearson created the event International Research Conference on LAM/TSC and LAMposium

              SAVE THE DATE!


              The International Research Conference on LAM and TSC and LAMposium DC

              Hyatt Regency Washington Capitol Hill

              400 New Jersey, Ave.  NW

              Washington, DC 20001

              3 weeks ago

                maria pearson

                maria pearson created the event LAM Education Meeting in Portland, OR

                SAVE THE DATE!



                LAM Education Meeting in Portland, OR

                Saturday, April 15, 2017

                Event details, times and location to follow.

                But we do know that LAM Clinic Director, Dr. Matthew Drake, from Oregon Health and Science University will join us.




                For additional information you can contact Sharlene Dunn at sharlene.dunn.home@gmail.com

                3 weeks ago

                  maria pearson

                  maria pearson created the event LAM Education Meeting in Seattle, WA

                  SAVE THE DATE

                  Saturday, April 29, 2017


                  Join LAM Clinic Director George Pappas, MD from Swedish Medical Center for an afternoon gathering to offer updates on the latest LAM research.


                  Details to follow including location and time.

                  3 weeks ago

                    maria pearson

                    maria pearson created the event Regional LAM Education Meeting in Atlanta, GA

                    SAVE THE DATE!

                    Saturday, January 28, 2017


                    Regional LAM Education Meeting in Atlanta, GA

                    Join LAM Clinic Director Srihari Veeraraghavan, MD, for an update on LAM Research.

                    More details to follow.

                    3 weeks ago

                      SharleneD

                      SharleneDanswered the question Transplant Evaluation

                      Hello KP, I received a bilateral transplant in October 2010. I first began the evaluation process in about 2004. My FEV1 had dropped to 28%, and my local pulmonologist felt it was time for me to be evaluated. Following the first couple of appointments …

                      3 weeks ago

                      KP

                      KPasked the question: Transplant Evaluation

                      For those who have had a transplant or are waiting, how did you decide when to evaluate? Would you share your FEV1, DLCO, and oxygen requirements at the time? Thanks.

                      4 weeks ago

                      Jacqueline faith

                      Jacqueline faith

                      Positive but tired

                      1 month ago

                        maria pearson

                        maria pearson created the event LAM Meeting in Wyndmoor, PA

                        Women with LAM, family and friends are all invited to a Holiday Potluck at the home of Patti Bebien-Aronoff, Region 4 Co-Liaison in Wyndmoor, PA.


                         A presentation from LAMposium 2016 will also be available to those interested.


                        Please RSVP by November 20th

                        1 month ago

                          Beverly

                          Beverlyanswered the question What do you use to carry your oxygen tanks?

                          To add more to this answer. I also like to hike though the length of the hike is limited by the number of tanks I can carry. I use a normal backpack and carry 3 of the M9 tanks in it.
                          SharleneD also answered the question SharleneD also answered the question

                          1 month ago

                          maria pearson

                          maria pearson created the event LAM Meet the Experts Reception in Scottsdale, AZ

                          You are invited to join members of The LAM Foundation's Scientific Advisory Board (SAB) for an evening of education and connection at The Scottsdale Resort at McCormick Ranch. Women with LAM, family and friends are all welcome to meet with some of the most knowledgeable LAM Researchers and Clinicians in the world at this unique event.


                          1 month ago

                            SharleneD

                            SharleneDanswered the question Has anyone used oxygen in the pool?

                            Hi Jean, I, too, love the water and wanted to stay with it, even while using oxygen. I didn’t do water exercise classes or aerobics, but I did swim a lot of laps. My set up was this: --7 ft. cannula --high flow tubing --E cylinder on cart --oxygen …

                            2 months ago

                            maria pearson

                            maria pearson created the event LAM Education Meeting in Richmond, VA

                            LAM and TSC patients, family members and friends are all welcome to the Mid-Atlantic Regional Education Meeting.Mid-Atlantic Regional Meeting.


                            Joel Moss, MD, PhD, Deputy Chief, Cardiovascular and Pulmonary Branch, National Heart, Lung, and Blood Institute, National Institutes of Health,  will present the latest LAM information, research and protocols.  Bring your questions!!!

                            2 months ago

                              KerriMorgan

                              KerriMorgananswered the question What was your favorite thing about RLDC LAMposium 2016?

                              I loved all the session!! So much information for patients, family members, and professionals. Dr. McCormack's 10 LAM Pearls was AWESOME!!!
                              Lynndi also answered the question Lynndi also answered the question

                              2 months ago

                              maria pearson

                              maria pearson created the event LAM Education Meeting in Elgin, IL

                              Women with LAM, family and friends are all welcome to join us for an afternoon gathering of friendship at Marie Glasby's home. LAM Liaisons and your hosts, Marie Glasby and Kathy Peiffer, will share their experiences at the RLDC•2016•LAMposium along with some of the presentation videos from LAMposium. If you were unable to attend LAMposium this year or want to reconnect with those you met at LAMposium, this will be a great gathering.


                              Warm hors d’oeuvres and beverages will be served. Please feel free to bring your favorite sweets to share.

                              2 months ago

                              • KPMarie and I are looking forward to a relaxing afternoon at her home this Saturday, November 12th. We will watch Dr. McCormack's session from lamposium "LAM Pearls" followed by discussion and sharing. We will also demonstration LAM 360 and present some of the latest LAM news. It's not too late to join us!4 weeks ago

                              Jean D

                              Jean Dasked the question: Has anyone used oxygen in the pool?

                              I used to swim a lot, until I became too short of breath. Now that I am using oxygen for exercise, I would like to start swimming laps at the local pool once again. Does anyone have any experience or any suggestions re managing oxygen tanks around the …

                              2 months ago

                              Barb

                              Barb

                              Anna, I am so happy to hear from you. August 31, 2016, my right lung was 80 percent collasped. I had a chest tube placed. A CT scan of my lung showed multiple lung nodules every where. I had surgery on my right lung, a VATS, pleurodesis, wedge resections. Initially I was told that the nodules were inflammation, but later found out I Have LAM. I am really scared. Will be going to University of Michigan.I am so glad you reached out to me, I felt like I was dealt a death sentence.

                              2 months ago

                              • Anne McKenna - Community ManagerHi Barb,

                                I'm sorry that you were feeling so scared but I'm so glad you found The LAM Foundation. As you can see, there are a lot of reasons to be hopeful. If there is anything further I can do to help, please don't hesitate to give me a call at the Foundation at 513-777-6889.

                                Take care,
                                Anne2 months ago

                              • GwenPHi Barb: Anne told me you had posted here and I wanted to welcome you. Since you are going to the University of Michigan, I would assume that you live in Michigan. I am the patient liaison for the state of Michigan. I have LAM too and have lived with LAM for almost 17 years. My job as a liaison is to help patients (either newly diagnosed or not) to deal with LAM issues whether it be finding a doctor, giving LAM information, or just being a listening ear for you if you need it. I would love to talk with you. You can reach me privately at gcpryor@gmail.com. I look forward to hearing from you! 2 months ago

                              Jean D

                              Jean Dasked the question: What do you use to carry your oxygen tanks?

                              I recently started using oxygen for exercise. My oxygen supplier gave me a cloth "over-the-shoulder" bag to hold a D tank, but the D tank is fairly heavy, and not practical for exercising (unless I'm on the treadmill or stationary bike.) They also …

                              2 months ago

                              lisa M

                              lisa M

                              Doing very well. Thankful and blessed.

                              2 months ago

                                maria pearson

                                maria pearson created the event LAPS For LAM in Chowchilla, CA

                                Join us as we walk to raise awareness for lymphangioleiomyomatosis (LAM) and provide funding for research to find a cure for LAM.

                                 The event takes place on the tracks at the Chowchilla Union High School Football Stadium on Saturday, October 15 starting
                                at 10:00am. Walk as little or as much as you want. Each lap around the track consists of a quarter mile. The total individual goal is 15 miles.

                                Register TODAY and receive a free t-shirt. *T-shirts are only guaranteed for pre-registrations submitted by October 5, 2016. Register between now and October 5 and receive 3 free raffle tickets!

                                2 months ago

                                Sally nagel

                                Sally nagelanswered the question Chest Pain in LAM patients

                                the only time I have chest pain is due to stress.. or if I drink something and it goes down the wrong way....
                                Anne McKenna - Community Manager also answered the question Anne McKenna - Community Manager also answered the question

                                2 months ago

                                Sally nagel

                                Sally nagel

                                had to re-register today... my bad... hope all is well with every one! had a great weekend with the ladies... if I didn't get to meet you .. I was sin fundraising off and on throughout the weekend.... also got the MRI done.. had no issues with it

                                2 months ago

                                maria pearson

                                maria pearson created the event LAM Education Meeting in St. Louis, MO

                                Women with LAM, family and friends are welcome to learn about all that took place at the 

                                RLDC•2016•LAMposium from Washington University LAM Clinic Director, Adrian Shiffren, MD. LAM Liaisons, Carmen Iglesias and Marla Hamlin, are hosting this meeting and will share a lite dinner with everyone along with their summary and photos from LAMposium 2016. Join us!

                                2 months ago

                                  maria pearson

                                  maria pearson created the event LAM Education Meeting in Portsmouth, NH

                                  SAVE THE DATE!

                                  Sunday, November 6, 2016

                                  Souheil El-Chemaly, MD, LAM Clinic Director from Brigham and Women's Hospital will review all that took place at the RLDC 2016 LAMposium.


                                  More information coming.


                                  Contact Madeline Nolan at CURELAM@AOL.COM to RSVP 

                                  2 months ago

                                    Anne McKenna - Community Manager

                                    Anne McKenna - Community Managerasked the question: What was your favorite thing about RLDC LAMposium 2016?

                                    I sincerely enjoyed meeting so many new people and putting faces with names of those I've only talked with on the phone.

                                    2 months ago

                                    Liezel Haupt

                                    Liezel Hauptasked the question: Chest Pain in LAM patients

                                    I attended the LAMposium in Covington Kentucky this past weekend and spoke with many of the LAM ladies. None of them complained about having chest pains. One lady mentioned discomfort, but not pain per se. I wondered if chest pain is an unusual occurence …

                                    2 months ago

                                    Liezel Haupt

                                    Liezel Haupt

                                    Still overwhelmed and in awe over the LAMposium of this past weekend. I've never experienced anything like it before. Worth travelling 8,500 miles from South Africa to attend. I feel grateful beyond words.

                                    2 months ago

                                    Eden

                                    Eden

                                    Really excited about the potential for the LAM360! What a great thing to startup at this latest LAMposium--in light of reaching out and working with the larger RLDC community!

                                    2 months ago

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