nks

nksreceived the badge Getting started

Earned the Getting started badge!
NancyJessica GallucciTerriand 562 others also received the badge Nancyand 564 others also received the badge

2 days ago

Adria Festina

Adria Festina

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 ❤😚

4 days 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.

    4 days 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.

      6 days 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 week 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 week 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.

        3 weeks 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.

          3 weeks 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

            1 month 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,
              Anne2 weeks 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.



            1 month 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!

              1 month 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.

                1 month 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!

                  1 month 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.

                    1 month 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,
                      Maria1 month 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

                    1 month 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!

                    1 month 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

                    1 month 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!

                    1 month 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,
                      Anne1 month 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 …

                    1 month 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!  

                    1 month 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.
                      Karen KTrish also answered the question Karen Kand 1 other also answered the question

                      1 month 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

                      2 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 …

                      2 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?

                      2 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.

                      2 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.

                        2 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.

                          2 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?

                            2 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.

                              Anne1 month 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.






                            3 months ago

                              KCP

                              KCP

                              I was diagnosed on Feb 23, 2017, then went through a confusing time. LAM isn't too well known so when they found a mass on my kidney my nephrologist referred me to a urologist and they said it appeared I had renal cell carcinoma on my left kidney and would need a partial nephrectemy. Then my pulmonologist said perhaps I didn't have LAM. So I decided to get another opinion as well as a biopsy and after a couple of months of visits and patiently waiting for results....they finally have concluded that it was not cancer, but the angiomyolipoma they thought it was in the very beginning. So LAM is my diagnosis. I registered for the LAMposium DC. Looking forward to connecting with others who are working through this disease. So far I am feeling okay. I just feel so tired all the time.

                              3 months ago

                              • Anne McKenna - Community ManagerHi KCP,
                                I'm so sorry to hear about your diagnosis but I'm glad that you finally have some answers. This is a great place for you to ask questions and get some answers. The best way to do that is to post in the question and answer forum because that's where it will get the most exposure.

                                I really look forward to meeting you at LAMposium. What a sweet picture of your family!

                                Anne3 months ago

                              • KCPThank you Anne. My profile pic is of me with my husband and my first grandchild:) I look forward to meeting you as well. Thank you!3 months ago

                              maria pearson

                              maria pearson created the event LAM SAB/Clinic Director Luncheon

                              Scientific Advisory Board and LAM Clinic Director ATS Luncheon

                              City Tap House DC

                              901 9th St.Washington, DC 20001

                              901 9th St.Washington, DC 20001

                              3 months 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 at the University of Utah Hospital. LAM Clinic Director, Robert Paine, MD and Silvia Smith, PhD will teach us 

                                how to interpret our PFTs reports so we know how to read and understand them. 

                                3 months ago

                                  VTKimG

                                  VTKimGanswered the question What is the current research saying about LAM patients becoming pregnant?

                                  Ashley - Pregnancy after diagnosis is a very personal decision. It is also very difficult because, unless you have already had a pregnancy, it is difficult to know in advance how your body will respond - whether your LAM will progress due to the …

                                  3 months ago

                                  Kat S.

                                  Kat S.answered the question What is the current research saying about LAM patients becoming pregnant?

                                  Hi Ashley, I am sorry to learn of your diagnosis, but am happy that you have found this resource. I was 28 when diagnosed with Lam, and my diagnosis came almost exactly one year after my daughter was born. Like you, I struggled (for over two years) with …

                                  3 months ago

                                  Mary Stojic

                                  Mary Stojicanswered the question What is the current research saying about LAM patients becoming pregnant?

                                  Ashley, I am so sorry about your diagnosis. There are certainly varying opinions on LAM patients and pregnancy. I had LAM symptoms (collapsed lungs and surgery starting at age 21 in 1985) prior to my pregnancies (3) but was not diagnosed until later …

                                  3 months ago

                                  maria pearson

                                  maria pearson created the event LAM Education Meeting in Phoenix, AZ

                                  The LAM Clinic at St. Joseph Hospital and Medical Center in Phoenix, AZ is offering a tour of the LAM clinic and hospital. LAM Clinic Director, Sofya Tokman, MD, will introduce you to the LAM clinic staff, present on the latest LAM research and answer your questions. Join your LAM Liaison, Belinda Romney and other LAM patients, family and friends for an afternoon to connect

                                  4 months ago

                                    Ashley C

                                    Ashley Casked the question: What is the current research saying about LAM patients becoming pregnant?

                                    I am 30 years old and was just diagnosed with LAM. My doctor says there are differing views on the safety with a pregnancy with LAM. Has anyone become pregnant after being diagnosed?

                                    4 months ago

                                    csirke

                                    csirke

                                    Hi. Can anyone tell me about whether we know anything about people who do not appear to benefit from sirolimus? thanks

                                    4 months ago

                                    • Anne McKenna - Community ManagerCsirke,
                                      This is a great question. While we know there are some individuals out there that don't respond to sirolimus there isn't any official research that has been done around this. Many that aren't able to use sirolimus for a variety of reasons find some benefits from using everolimus (Afinitor) which is another mTOR inhibitor.

                                      This is also a question that will be discussed at the Patient-Focused Drug Development (PFDD) meeting we will be holding in partnership with the TS Alliance on June 21st. If you're interested in learning more about how you can participate (in person or online), please visit http://www.tsalliance.org/pfdd.

                                      Take care,
                                      Anne4 months ago

                                    maria pearson

                                    maria pearson created the event LAM Brunch Gathering in Philadelphia, PA

                                    LAM Liaison Patti Bebien-Aronoff invites you to join her and other LAMMIES for a casual Brunch in Chestnut Hill at Paris Bistro.


                                    DATE: Sunday, May 7, 2017

                                    4 months ago

                                      Marla

                                      Marlaanswered the question health products and supplement

                                      I am not trying to "sell" this, but I have been on supplements, fruits & vegetables in capsule! With Getting all these nutrients in my body every day, I don't get as sick as much, plus I have more energy. There are Many LAM women on it & they can tell a …

                                      4 months ago

                                      Sign In to Participate
                                      Or register to become a member