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3 days ago

S

S

Hi Esme! Very glad we were able to get together last night... we're here for you!

1 week ago

    DBlessed

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

    Hi Mary, I do not want to discourage you nor do I want to say something that is not true. And, I also want to be honest. With that said, I have found that anything is possible with Sirolimus. I have been on a low dose of Sirolimus and have battled one …
    Mary HTashiroand 1 other also answered the question Mary Hand 3 others also answered the question

    1 week ago

    Faith Strong

    Faith Strong

    I have recently taken the VEGF-D blood test and now awaiting results. What should be my next step? If it comes back normal or not normal, what is my next step? Do I get my local pulmonologist that I have been seeing to refer me to a LAM specialist?

    1 week ago

    • DBlessedHi Faith,
      I am sorry you are having to get intimate with LAM. I felt every much like you do right now in late 2015 and beginning 2016. I also am a woman with a strong faith in Jesus, our Messiah and He has walked faithfully with me through everything I have encountered and continually gives me grace, peace and mercy as well as direction each day because I will say, my day's are very challenging. I seem to have fairly decent FEV1 and FVC values but my DLCO value, which tells how well the lungs are exchanging CO2 and O2 is 30% of predicted and normal is 98-100 so I am out of breath much of the time I am moving around. I am on oxygen when I am mobile yet my muscles often feel like I have had a really hard work out or have done a repetitious exercise on a particular muscle to complete failure. I would get to a LAM specialist at a LAM clinic as soon as you can get there. You will not be sorry AT ALL! I do not know where you live but there are LAM clinic's scattered all across the country. There you will find more information and learn more from someone who is seeing more than one patient with LAM. On January 1 2016, I was admitted to the local hospital because my oxygen saturation dropped down to 70%. When they found out I had LAM, they wanted to transfer me to Vanderbilt ASAP. I was glad they did because it was clear they really were not in the mood to learn something new and had no idea what to do with me. At Vanderbilt I was not the first patient they had seen with LAM. You do not have to break ties with your local pulmonologist if you like him/her. It is not a bad idea to have someone locally however, you should be tracked by a doctor who is familiar with the illness and has a network of specialist physicians who are studying this or have other professionals to reach out to should you have any unique complications from it. They have no problem with consulting other physicians who may have some experience in what you may be going through. For educ ...1 week ago

    • Faith StrongThank you for responding! I will be praying for you. Thank you so much for the information. My closest clinic is probably Dallas. I plan to speak with my pulmonologist this week and possibly set something up. 1 week ago

    ro

    roanswered the question Symptoms worsen with a cold?

    Hi Jules. As the others said, all of us with lung disease must take extra precautions with colds and flu. My LAM doc is so cautious that when I know a cold has set in, I email him directly and he calls a Z-pak (antiobotic) into my pharmacy to hopefully …
    Karen KMary HLaura Lammie also answered the question Karen Kand 2 others also answered the question

    1 week ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Manageranswered the question VEGF-D Blood Test

    Hi Jules, While the VEGF-D test can be useful for diagnosis in some cases, it has been known to come back at normal levels in some women with LAM. This doesn't mean LAM is not present, it only means this biomarker is not elevated. There is still a lot …

    2 weeks ago

    Jules

    Julesasked the question: VEGF-D Blood Test

    How often do these blood test results come back abnormal/elevated? My results had came back normal, but ended up having a biopsy which was on the fence, but was ultimately decided I had LAM.

    2 weeks ago

    Jules

    Julesasked the question: Symptoms worsen with a cold?

    Hello - I was diagnosed with LAM a few months back. I am 24 and overall healthy and do not currently have symptoms other than multiple collapsed lungs, which I had a pleurodesis in both lungs to hopefully halt that. My surgeon did not think I had LAM …

    2 weeks ago

    Rosantsia

    Rosantsia

    Great! How does this work?

    2 weeks ago

      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 month 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 month 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.

          1 month 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.

            1 month ago

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

            • Karen KI suggest you get a copy of The LAM Handbook from The LAM Foundation. It is a wonderful resource that is well written by fellow Lammies. It may answer quite a few questions.2 weeks 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 month 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.

              1 month 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.

                1 month 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.

                  1 month 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 ❤😚

                    2 months 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.

                    2 months 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.

                      2 months 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 …

                        2 months 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. …

                        2 months 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.

                        2 months 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 months 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

                            3 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,
                              Anne2 months 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.



                            3 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!

                              3 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.

                                3 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!

                                  3 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.

                                    3 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,
                                      Maria3 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

                                    3 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!

                                    3 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

                                    3 months ago

                                    Elisa

                                    Elisaanswered the question Información sobre el efecto del everolimus

                                    Hola Paola, Soy Elisa Martínez saludando desde México. Como te comentan Anne y Majo, es importante que estés de la mano con tus doctores para este tema (y ellos con los de Estados Unidos). Ambos medicamentos ayudan a estabilizar la función pulmonar, lo …

                                    3 months ago

                                    Maria Jose Salazar

                                    Maria Jose Salazaranswered the question Información sobre el efecto del everolimus

                                    Hola Paola! Soy Maria Jose y vivo en Guatemala. Realmente no te puedo dar una respuesta porque yo tomo Sirolimus que es el que encuentro aquí. Creo que lo mejor es que tus médicos puedan informarse bien y por supuesto puede ser muy útil que se conecten …

                                    3 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!

                                    3 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,
                                      Anne3 months ago

                                    Anne McKenna - Community Manager

                                    Anne McKenna - Community Manageranswered the question Información sobre el efecto del everolimus

                                    Hola Paola, Everolimus y siroliumus son fármacos muy similares y se han utilizado ambos en el tratamiento de LAM. Tendrá que consultar con su médico, pero ya que no tiene acceso al sirolimus, tomar everolimus puede ser útil para usted. Por favor, …

                                    3 months ago

                                    maria pearson

                                    maria pearsonanswered the question Información sobre el efecto del everolimus

                                    TRANSLATION: Hello, I'm from Uruguay and recently diagnosed with LAM. I am finding more about my country's procedures to acquire the medication everolimus that supposedly has similar properties to sirolimus. I would like to know if you can tell me …

                                    3 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 …

                                    3 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!  

                                    3 months ago

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