maria pearson

maria pearson created the event LAM Regional Meeting in Genesee Depot, WI

LAM Liaisons, Kathy Peiffer and Marie Glasby are on the road! Join them for lunch or coffee as they had north of their hometowns in Chicago to meet patients with LAM who live near Genesee Depot, WI.


LAM patients, family and friends from Illinois, Wisconsin, Iowa and Minnesota are all invited to meet new people, share LAM stories and socialize.  Please come when you can and leave when you’re ready.  Food and beverages will be available for purchase.  

1 day ago

    Faith Strong

    Faith Strong

    A little overwhelmed. Just was told my CT scan showed signs of LAM. Right now just wanting to be educated and be able to explain to my family and friends what exactly LAM is. I have never heard of LAM. My faith is strong so I'm preparing myself to go through this journey. I will have a followup CT in January 2018 and also have a blood test sometime in the near future.

    1 day ago

      Faith Strong

      Faith Strongreceived the badge Getting started

      Earned the Getting started badge!
      LilyIWantToHelpgingerand 599 others also received the badge Lilyand 601 others also received the badge

      2 days ago

      maria pearson

      maria pearson created the event LAM Education Meeting in Bentonville, AR

      LAM Liaison, Beverly Jackson is hosting a regional LAM education meeting at the Comfort Inn in Bentonville, AR.  Beverly will share her experiences at LAMposium DC, including LAM Day on Capitol Hill where she shared information about women with LAM with Arkansas congressional members. Thomas Lowder, PhD, will discuss his exercise program and Michele Pycior will present on ways to receive deals on your medications. We will also discuss plans for the Patient Benefit Conference, LAMposium LA and Breath of Hope Gala taking place in November.

      2 days ago

        Kimerz44

        Kimerz44

        Hello
        My diagnosis was last year and haven't thought of it much since because my surgeon who informed me of the diagnosis told me at the time that it was something I have but it was nothing to worry about. But recently I have had a few episodes of weird chest pain that at the time I thought was a heart attack but when I went to the hospital we determined it was not. They couldn't figure out what it was so settled on indigestion and I didn't give my having LAM a second thought because my doctor had said it was nothing to worry about so I didn't bring it to the ER doctors attention. But after having two more identical issues I believe it might have been related to LAM I have made a new appointment with my Doctor in hopes of getting him to look into this with me. It is just frustrating when your doctors don't really talk to you about it or give you any information on it. Thanks for listening.

        6 days ago

        • Faith StrongPraying you find answers. I've just been diagnosed so I have alot of questions to ask. 1 day ago

        maria pearson

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

        SAVE THE DATE!


        Your LAM Liaisons, Marie Glasby and Kathy Peiffer are hosting a LAM Education Meeting at Loyola University with LAM Clinic Director, Daniel Dilling, MD.


        Dr. Dilling will be returning from the PATIENT BENEFIT CONFERENCE AND LAMPOSIUM LA.  He will share news and research updates from the conference. 

        1 week ago

          Mary H

          Mary Hanswered the question Is it normal to experience constant eye afections due to low immune system?

          I did have two occurrences of chalazions, one in each eye, shortly after starting sirolimus. That was the first time that I ever had this problem and I have not had any further occurrences.
          DBlessedTashiroand 1 other also answered the question DBlessedand 3 others also answered the question

          2 weeks ago

          maria pearson

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

          LAM patients, family and friends are all welcome to a LAM Education meeting in Portsmouth, NH. LAM Clinic Directors, Lisa Henske, MD, and Souheil El-Chemaly, MD will join us, along with 

          Shefali Bagwe, M.B.B.S. Clinical Research Coordinator, from the Center for LAM Research and Clinical Care at Brigham and Women's Hospital. You can have all of your LAM questions answered in a comfortable interactive gathering plus they will give us updates on LAM research taking place at Brigham and Women's Hospital and other medical facilities.

          2 weeks ago

            maria pearson

            maria pearson created the event AARC Congress 2017, Indianapolis, IN

            The Annual Meeting for the American Association for Respiratory Care is taking place in Indianapolis, Indiana from October 4 - 6, 2017. The LAM Foundation will be there to educate the Respiratory Therapists from around the country about LAM and Share the new ATS LAM Guidelines.

            3 weeks ago

              maria pearson

              maria pearson created the event 9th Annual Chowchilla LAPS for LAM

              Join Peggy Haupt and the Chowchilla Community for the 9th Annual Chowchilla LAPS for LAM. Building awareness and raising money for The LAM Foundation.

              3 weeks ago

                Adriana Festini

                Adriana Festini

                I m confused really confused...I know it past week for my diagnoses of LAM and the pulmologest in my countrey doesnt have any exist and for me is it really panic..
                I found this web site and I m really happy for this..I something learn from you..thank you very much ❤😚

                1 month ago

                maria pearson

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

                LAM Liaisons, Marla Hamlin and Carmen Inglesias are hosting a LAM Education meeting at the Barnes Jewish Hospital on Wednesday, October 25. LAM Clinic Director, Adrian Shifren, MD, will give us an update on the MILED Trial and other LAM research studies and Clinical Research Coordinator, Brigitte Mittler will present on "The Ins & Outs behind Research studies on Lung Diseases". Patients with LAM, family and friends are all welcome to join us to connect over a light dinner.

                1 month ago

                  maria pearson

                  maria pearson created the event LAM Education Meeting in Eagan, MN

                  Your LAM Liaison, Sharon Hovland is hosting a LAM Education Meeting in Eagan, MN. LAM patients, family and friends are welcome to join with LAM Clinic Director, Misbah Barqir, MD and Sue Sherman from The LAM Foundation for a day full of information and togetherness. Connect with other patients with LAM and learn about new LAM research and all that is happening at The LAM Foundation.

                  1 month ago

                    Anne McKenna - Community Manager

                    Anne McKenna - Community Manageranswered the question How do I find an article listed on website?

                    Hi SFBJ, This is a scholarly article that was published in a journal and because of copywrite laws these articles are sometimes not widely available online. However, here is a link to the abstract . You can access the full article by clicking on the PDF …

                    1 month ago

                    SFBJ

                    SFBJasked the question: How do I find an article listed on website?

                    How do I find this article ? LAM produces fatigue 9: Cohen MM, Pollock-BarZiv S, Johnson SR. Emerging clinical picture of lymphangioleiomyomatosis. Thorax. 2005 Oct;60(10):875-9. Epub 2005 Ju29. PubMed PMID: 16055626; PubMed Central PMCID: PMC1747203. …

                    1 month ago

                    maria pearson

                    maria pearson created the event LAM Lunch Gathering in New Brunswick, NJ

                    SAVE THE DATE!

                    LAM Liaison Patti Bebien-Aronoff along with 
                    Marsha Fishman are hosting a LAM Lunch Gathering on Sunday, September 24. Patients with LAM, family and friends are all welcome to join to connect, learn about all that took place at LAMposium DC and find out about what the Foundation is planning for the Patient Benefit Research Conference and LAMposium LA.

                    Check back often to get location updates.

                    1 month ago

                      maria pearson

                      maria pearson created the event LAM Education Meeting in New York City

                      Sarah Poitras is back in the United States and is hosting a LAM Education Meeting for patients with LAM, family and friends who live near New York City. Gather with Sarah and LAM Clinic Director, Jeanine D'Arminento, MD  or Monica Goldklang, MD from Columbia Presbyterian Hospital. 

                      Dr. D'Armiento or Dr. Goldklang will share all the new research discussed at the International Research Conference on TSC and LAM in Washington D.C. And Sarah will share advice for traveling oversees and highlights from her yearlong journey meeting with women with LAM all over the world.

                      1 month ago

                        mariajo

                        mariajo

                        Hello, In am MJose Blasco Contreras, I am from Spain , and I suffer CET + Lam.
                        At the moment I can,t travell to USA but
                        I would like to be gen up on news Lam reaserch clinic, actual investigations .....
                        thank you

                        best wish

                        2 months ago

                        • Anne McKenna - Community ManagerHi Maria Jose,

                          Joining LAM360 is a great way to stay up on the latest in LAM research. I hope you find the information you find on our website helpful. I'd highly recommend asking a question in the Questions and Answers forum. We have several other spanish-speaking women on the forum whose advice you may find helpful.

                          Take care,
                          Anne1 month ago

                        maria pearson

                        maria pearson created the event LAM Education Meeting in Jacksonville, FL

                        Please join us for a LAM Education meeting at the Mayo Clinic in Jacksonville, Florida. Dr. Charlie Burger and the LAM Clinic team will be with us to share news on LAM research and drug therapy Your LAM Liaison Jackie Carroll will share her experience advocating on Capitol Hill  while at LAMposium DC and how you can advocate for NIH funding with your congressmen from home.




                        LAM patients, family and friends are all welcome to join us for the day to connect and learn from each other. A lite lunch will be served.



                        2 months ago

                          maria pearson

                          maria pearson created the event LAM Social Gathering in Mansfield, MA

                          Let's gather for lunch and welcome your new LAM Liaison Jean Daley.  We can share some laughs and support. Family and friends are always welcome to join too!

                          2 months ago

                            maria pearson

                            maria pearson created the event Breath of Hope - Yoga and Social, University of Illinois, Chicago

                            Nikita Rath is hosting a large yoga session and vegan social at the University of Illinois, Chicago.


                            Details are still forthcoming, so check back often for more information.

                            2 months ago

                              maria pearson

                              maria pearson created the event Hard Hat Golf Outing in Crown Point, IN

                              The Hard Hat Golf Committee has chosen The LAM Foundation as one of their charities to donate proceeds from their annual golf outing. Additional details will be announced soon!

                              2 months ago

                                Tashi

                                Tashi

                                I am not sure if the message I wrote a couple of minutes ago went through, so I will ask this again. I am on 1.5 mg of Sirolimus daily. I am feeling like if I starting a cold or influenza since there is an outbreak in my country. In Honduras there are no LAM clinics, and the dr who sees me is an oncologist, and can get an appointment until next week. What can I take meanwhile for body ache that will not interact with Rapa? Recently I was at NIH, and brought this up. Normally I am healthy and just take vitamins and for my high blood pressure. One of the drs explained, that I should be careful in taking other medications that might interact. So now I am confused. Help please.

                                2 months ago

                                • maria pearsonTashi,
                                  If you have a moment, can you move this question over to the Answer and Question section of this site? That way others can answer your question and we can tag your question for others to review.
                                  Thanks,
                                  Maria2 months ago

                                Paola

                                Paolaanswered the question Información sobre el efecto del everolimus

                                Muchas gracias a todas por la información!!! Sin dudas que cada cosa la consultaré con mis médicos! Besos
                                ElisaMaria Jose SalazarAnne McKenna - Community Managerand 1 other also answered the question Elisaand 3 others also answered the question

                                2 months ago

                                Audette

                                Audette

                                Hi Anne....thank you so much for spending time with me and answering my questions. I always feel much calmer and have a better understanding of LAM. Have a wonderful holiday!

                                2 months ago

                                Ted

                                Ted

                                Hi I am the father of a LAM patient and my daughter is having a problem with her diet.. Can you point us in the right direction pertaining to a Soy free diet ?

                                Thank You

                                Ted Bornstein

                                2 months ago

                                Khadija

                                Khadija

                                I m feeling ok...using sirolimus coz I m suffering from Angiomylipomer in my kidneys and LAM!
                                Before I used Certican but it's gives me unbearable pain that's why my Doctor suggested me sirolimus!
                                Using medicine from last 17 days and Doctors taking my blood tests regularly coz they increased my dose by 2mg and coz of increasing the dose I m feeling more pain or pressure in my kidneys again! Have no idea it's works for me or not!

                                2 months ago

                                • Anne McKenna - Community ManagerHi Khadija,
                                  I'm sorry to hear that you're still feeling pain and pressure. Sometimes it can take some time before you will see results from taking sirolimus. You should definitely reach out to your doctor if the pain or pressure is bothering you to see if they can help you in some way. Hopefully this will work for you!

                                  Take care,
                                  Anne2 months ago

                                Paola

                                Paolaasked the question: Información sobre el efecto del everolimus

                                Hola soy de Uruguay y recientemente me diagnosticaron LAM averiguando Un poco mejor entere Que es Nuestro País Estaban en trámites para Adquirir el medicamenti everolimus Que Supuestamente Tienen propiedades SIMILARES al sirulimus. Queria sabre si …

                                2 months ago

                                maria pearson

                                maria pearson created the event Utah LAM Family Picnic

                                SAVE THE DATE!

                                Join us for a Utah LAM Family Picnic!

                                Bring your whole family!  Mark your calendars and keep watching for more updates!  

                                2 months ago

                                  Brendasurber

                                  Brendasurberanswered the question Can LAM as it advances lead to changes in Cardiac output and rhythm?

                                  I have PVC's as well. I had a cardiac ablation in 2002 but it was unsuccessful. I take Toprol twice a day and Inderal as needed. They've gotten more bothersome so I'm going to have a halter monitor next month to see what's going on.

                                  2 months ago

                                  ktlammie

                                  ktlammieanswered the question Participate in Research!

                                  Yes, I have had a single lung tx. I would be happy to answer your survey. Kathy T

                                  3 months ago

                                  ktlammie

                                  ktlammieanswered the question Sometimes I feel SOB, but my pulse oximeter indicates SATs are fine.

                                  Mardi, what you are feeling is due to carbon dioxide (CO2) build up in your lungs. I have had this happen several times. LAM keeps us from being able to get rid of all the CO2 when we exhale and sometimes it builds up enough to cause this shortness of …

                                  3 months ago

                                  Mardi

                                  Mardiasked the question: Sometimes I feel SOB, but my pulse oximeter indicates SATs are fine.

                                  I'm wondering why sometimes I feel short of breath without any exertion but when I check my pulse ox everything is normal. It's reassuring, of course, but why would this be?

                                  3 months ago

                                  maria pearson

                                  maria pearson created the event LAM Education Meeting in Asheville, NC

                                  For the first time ever, LAM patients, family and friends are welcome to join us in Asheville, NC, for a LAM Education meeting. LAM Liaison, Susie Picart is hosting this meeting with Laura Bowers and Dr. Charlie Strange. Join us to learn about all that took place at LAMposium DC including news on LAM research. Laura Bowers will share her experience building LAM awareness with ER and Ob/Gyn doctors and a dietitian will join us to talk about improving lung health through diet and exercise.

                                  3 months ago

                                    maria pearson

                                    maria pearson created the event LAM Education Meeting in Ann Arbor, MI

                                    Patients with LAM, family and friends are invited to the LAM Clinic in Ann Arbor, MI for a LAM Education Meeting.  Meet the LAM Clinic staff, learn about that that took place at LAMposium DC and updated on LAM research. Dr. MeiLan Han and her staff will join us for lunch and to answer questions.

                                    3 months ago

                                      maria pearson

                                      maria pearson created the event LAM Education Meeting in Stanford, CA

                                      Join your LAM Liaisons, Shellie Owens and Susan Jacobs, RN, MSN, for the latest LAM research news from LAMposium DC and the ATS conference that took place in May. LAM Clinic Director, Stephen Ruoss, MD will be with us to go over the latest news and answer your questions. Patients with LAM, family and friends are always welcome. We will gather to connect over a 'potluck' lunch.

                                      3 months ago

                                        mj

                                        mj

                                        Hello everyone, I'm mj from the PHILIPPINES and we have reported 3 cases already of LAM in our institution and we would like to know if there is a way for our patients to participate in the LAM activities?

                                        3 months ago

                                        • Anne McKenna - Community ManagerHi MJ,

                                          The best way to have patients participate would be to have them register with the Foundation and to have them participate on this forum. This is a great place to connect with other LAM patients as well as get some of your questions answered.

                                          Anne2 months ago

                                        maria pearson

                                        maria pearson created the event 5th Annual BLAM! Golf Tournament in Topeka, KS

                                        The BLAM! Golf Tournament was conceived by the family of LAM patient Annette Roberts as a way to build awareness of the rare lung disease lymphangioleiomyomatosis (LAM) and to raise funds for The LAM Foundation, one of the lead organizations in the fight against the disease.






                                        4 months ago

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