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 day ago

    Sis McGahey

    Sis McGaheyreceived the badge Getting started

    Earned the Getting started badge!
    Walking10minsMaria0314JShovsand 543 others also received the badge Walking10minsand 545 others also received the badge

    2 days 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 days 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!

      5 days 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 week 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 week 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 week 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,
              Maria4 days 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 weeks 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 weeks 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 weeks 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 weeks 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 weeks 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 weeks 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 weeks 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

              3 weeks 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

              1 month 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 …

              1 month 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?

              1 month 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.

              1 month 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.

                1 month 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.

                  1 month 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?

                    1 month 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 weeks 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.






                    2 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.

                      2 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!

                        Anne2 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!2 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

                      2 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. 

                        2 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 …
                          Kat S.Mary Stojic also answered the question Kat S.and 1 other also answered the question

                          2 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

                          3 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?

                            3 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

                            3 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,
                              Anne3 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

                            3 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 …

                              3 months ago

                              ADK

                              ADKasked the question: Rapamune and allergy shots

                              I've been tested for allergies recently and apparently I'm allergic to trees, weeds, and fungus. So my Dr wants to start allergy shots every week for several years. My question is, will Rapamune interfere with the immune response needed for the allergy …

                              3 months ago

                              Beverly Holtzman

                              Beverly Holtzman

                              I am good. just registered for the DC Lamposium. How do I add an picture to this site

                              3 months ago

                              • Anne McKenna - Community ManagerHi Beverly,

                                It looks like you were able to get your picture up. I like it. :)

                                Looking forward to seeing you at LAMposium DC. Let me know if you have any other questions about LAM360.

                                Take care,
                                Anne3 months ago

                              Hope7773

                              Hope7773

                              Hope your day is well Anna Mckenna? Can't believe Easter is around the corner. Have a good day and night.

                              3 months ago

                                Hope7773

                                Hope7773

                                Since I talked to the Mayo Clinic why I was seeing them due to the Lam Disease. I've been having other issues besides my lungs. Now for almost a month My abdomen has distended alot. Continual swelling and abdominal pain. Along with shortness of breath. Is it common to have abdominal swelling like that. I was already almost 200lbs. Now I look 9 months pregnant. Am I crazy. Or is something not right. By the way, my first appointment hasn't even taken place yet. I don't see the doctor at the LAM clinic til Tues. April 4th 2017. Let me know your thoughts and opinion on this....I know your not a doctor. I'm just frightened and need some friendly advice.

                                3 months ago

                                • DBlessedHi Hope7773,
                                  I know that you are frightened. I have been there and have experienced abdominal pain and swelling. You are not crazy. There are other complicating factor's with LAM and the abdomen. I would say if you are experiencing extreme abdominal pain and you are experiencing increased shortness of breath and you can not wait until April 4th, I would go to the emergency room. If you can wait, be sure to discuss this with your doctor and tell him/her that you are increasingly short of breath and having swelling in the abdomen as well as pain. Since you are seeing a LAM clinic doctor they will be aware of what you are talking about. If you have not yet explored the LAM Foundation website, I would highly recommend clicking on to the heading LAM patients, family and friends and then click onto the Video heading. There are short video topics that discuss LAM basics as well as complications that can arise from LAM. It may seem overwhelming at first when you learn these things but there is so much hope in managing all this with help. Knowledge is power. It will help you be your own best advocate. If you find you are able to watch some of the video's, and you feel overwhelmed, I will try to be around my computer tomorrow (write myself a note) and will check to see if you have reached out. I watched a couple and then watched a good funny movie or detective show. It 's just a lot to digest at first. But please be assured you are not crazy. Hope you start feeling better soon. I will lift you up in prayer tonight.3 months ago

                                DBlessed

                                DBlessed

                                Hi all,
                                I have a question that I am wrestling with. I am pretty weak from LAM and infections as well as other medical issues. I am doing prescribed physical therapy on my own and hoping to get some strength back but I am barely able to get to the car with my purse, oxygen, Bible, and other paraphernalia. I am thinking of getting a purse on wheels (more or less a briefcase). I have looked for many many days on the web checking out all the cases and their warrenty and think I have an idea but I could use some suggestions. This is wearing me out. If my oxygen were not a backpack that would be a good option but I am looking for a case I can slip a portable tank on as well since my energy is low. I have Fibromyalgia as well so it has been a struggle getting to the car and in and out of it as well. All I have been able to come up with is a rolling purse. I did realize that if nothing else is suggested that I should get a spinner case for the easy of getting in and out of the house. Any suggestions would be greatly appreciated!!!!!

                                3 months ago

                                  Thenewme2017!

                                  Thenewme2017!answered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                                  Thanks Everyone for your comments and support! If anyone had positive experiences/tools that helped them with side affects they can share I'd love to hear!

                                  3 months ago

                                  Anne McKenna - Community Manager

                                  Anne McKenna - Community Manageranswered the question LAM, Type 2 Diabetes

                                  Hi KikiB, This is an interesting question. From the research I've done, there is no connection between LAM and Type 2 diabetes. You may want to consider reaching out to your LAM specialist to get his/her opinion, as well. They may have a different …

                                  3 months ago

                                  KikiB

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

                                  Hi Jean, I have an Imogen oxygen concentrator and use it for exercise at the gym and long-distance walking and hiking. I found a lovely flowered cloth backpack that was not specifically designed for a concentrator but fit perfectly. I use a 4 ft. …

                                  3 months ago

                                  KikiB

                                  KikiBasked the question: LAM, Type 2 Diabetes

                                  Does LAM affect the pancreas in any way and therefore Type 2 diabetes?

                                  3 months ago

                                  Karen K

                                  Karen Kanswered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                                  The symptoms you listed, specifically the edema and unusual (heavy) periods are known side effects of Rapamune.

                                  3 months ago

                                  Shelby G.

                                  Shelby G.answered the question Botox? Is it safe while on sirolmis?

                                  I have used botox for cosmetic reasons for about two years. I have also been using it for Migraine treatment for about one year. I have approval from my pulmonologist, neurologist and nephrologist. They are not concerned with it interacting with …

                                  3 months ago

                                  Optimistic

                                  Optimistic

                                  Hello All,

                                  I had a lung biopsy two weeks ago and was diagnosed with LAM on Thursday, 3/23/17. I have gone through sooooo many emotions over the past few years trying to figure out what's going on with my health. Currently, I have a sense of relief that "I now have a diagnosis!" I am meeting with my doctor today for the first time after my lung biopsy. I have done some research on my own on the disease but I am not quite sure what I should ask him today when we meet...any suggestions on what I should ask? Any suggestions would be greatly appreciated.

                                  3 months ago

                                  • Click to View All Comments4 comment(s) -
                                  • DBlessedHi, Optimistic,
                                    To be honest I didn't know what to ask. In Sept of 2015, when I went on the web much of the data had not been updated so much of it was sad and conflicting and I realized there was so much to learn. I watched all the LAM Foundations vimeo's on LAM and that helped a bunch. They had a hopeful approach and I think I watched around 25 (that was on the old website) in the first 2 months. While I can find all that I watched now, they still have many to glean from. My doctor was Lisa Young at Vanderbilt and she really explained things well. She seemed to anticipate my questions. I would say that questions will come to you as you learn the new aspects of all this. I hope this helps.3 months ago

                                  • DBlessedHi, Optimistic,
                                    To be honest I didn't know what to ask. In Sept of 2015, when I went on the web much of the data had not been updated so much of it was sad and conflicting and I realized there was so much to learn. I watched all the LAM Foundations vimeo's on LAM and that helped a bunch. They had a hopeful approach and I think I watched around 25 (that was on the old website) in the first 2 months. While I can find all that I watched now, they still have many to glean from. My doctor was Lisa Young at Vanderbilt and she really explained things well. She seemed to anticipate my questions. I would say that questions will come to you as you learn the new aspects of all this. I hope this helps.3 months ago

                                  • Anne McKenna - Community ManagerHi Optimistic,

                                    I'm so sorry to hear about your diagnosis but glad you found The LAM Foundation. If there is anything I can do to help you as you are learning more about the disease, please don't hesitate to ask. You can reach me through LAM360, by phone at (513) 777-6889 or by email at amckenna@thelamfoundation.org.

                                    Take care,
                                    Anne3 months ago

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