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1 hour ago

Anne McKenna - Community Manager

Anne McKenna - Community Manageranswered the question What can be done about LAM cells gathering in the lymphatic system?

Hi Annie, Have you been checked for a chylous effusion (chlye fluid build up in your abdomen)? This isn't common but can happen to about 30% of women with LAM. Your doctor would likely take an xray or perhaps a CT scan to determine if this is the case. …

2 hours ago

Annie

Annieasked the question: What can be done about LAM cells gathering in the lymphatic system?

My upper and lower abdomen are swollen and have a rash. I look pregnant.

3 hours ago

Tashi

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

I did not used the right word ( afection) I tried to translate it from Spanish. I do not have any infection in my eyes, but for some reason my eyelids get swollen. Thank you for your response.
roN Gupta also answered the question roand 1 other also answered the question

14 hours ago

maria pearson

maria pearson created the event Million Dollar Bike Ride in Philadelphia, PA

The PENN MEDICINE ORPHAN DISEASE CENTER (ODC) will host the 4th Annual Million Dollar Bike Ride on Saturday, May 20th, 2017 to raise money for rare disease research.

23 hours ago

    maria pearson

    maria pearson created the event ATS Conference in Washington, DC

    American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

    23 hours ago

      maria pearson

      maria pearson created the event ATS Conference in Washington, DC

      American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

      Exhibit hall opens 8:00am - 2:45pm

      23 hours ago

        maria pearson

        maria pearson created the event ATS Conference in Washington, DC

        American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

        Exhibit hall opens 8:00am - 2:45pm

        23 hours ago

          maria pearson

          maria pearson created the event ATS Conference in Washington, DC

          American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

          Exhibit hall opens 8:00am - 2:45pm

          23 hours ago

            maria pearson

            maria pearson created the event ATS Conference in Washington, DC

            American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

            ATS PAR Meet-the-Experts Patient and Family Forum from 10:00am - 2:00pm


            Opening Ceremonies 4:30 - 5:30

            23 hours ago

              maria pearson

              maria pearson created the event ATS Conference in Washington, DC

              American Thoracic Society Conference May 19 - 24, 2017 in Washington, DC.

              POSTGRADUATE COURSES

              Assembly on Critical Care 8:00 a.m. - 4:00 p.m.




              1 day ago

                maria pearson

                maria pearson created the event Rare Disease Day

                28 February 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.

                1 day ago

                  ro

                  roanswered the question Liver

                  I have been on rapa over 8 years and occasionally have high liver enzymes, but not as a general rule. I think the rapa might make me super sensitive when I add in occasional alcohol or acetaminophen use that my enzymes are high. I haven't had any scans …

                  1 day ago

                  Tashi

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

                  I am constantly having problems with my eyes and I want to know if this could be related with using Rapamune ( 1.5 mg.) ,and was wondering if this could relate to my low immune system. I have a chalazion since December, and like every two months my …

                  4 days ago

                  DBlessed

                  DBlessedanswered the question Has anyone used oxygen in the pool?

                  Hi Jean, I love the water as well. I go to the YMCA and do Ai Chi in the water. I have put my Helios into a bucket and I have a small weight in it to make it extremely difficult to pull into the pool. I set it near the pool but not at the edge and use a …
                  SharleneD also answered the question SharleneD also answered the question

                  4 days ago

                  Anne McKenna - Community Manager

                  Anne McKenna - Community Managerasked the question: Participate in Research!

                  If you are a woman with LAM who has considered or had a lung transplant, we need your help. We've got a unique opportunity for you to help LAM patient, Laura Bowers and Clinic Director, Dr. Charlie Strange by completing their survey. You can …

                  5 days ago

                  Tashi

                  Tashiasked the question: Is there any relationship between Rapamune and getting swollen eyes, or chalazions?

                  Hello, I would appreciate your guidance concerning some issues I have with my eyes, and have not experienced before but recently. Since September 2016, I have experienced a recurrent chalazion and swelling in my eyes. I have a Chalazion in my right eye …

                  5 days ago

                  Rubyred

                  Rubyred

                  My heart just broke today. Jan 19th I had a much needed hysterectomy. Feb 3, I developed a "large " pneumothorax. Dr was concerned because of the significant shift to my heart. When my thoracic surgeon said "lymphangioleimyomatosis" I quickly asked if it was related to the two angiomyoliopmas I had on my left kidney twice before! We discussed the similarities. Today I found a ct scan that was done in 2015 which stated I had small cyst bilaterally in my lungs. I remember asking my general surgeon ( dx :fibroid rt breast) and he stated not to worry, probably infection residual, many people have some. I wonder how many patients have slipped thru the cracks like me. This keeps playing thru my mind......over and over

                  1 week ago

                  • Anne McKenna - Community ManagerUnfortunately, you are not alone. I hear stories like this all the time. I'm glad to hear that you've FINALLY gotten a definitive diagnosis so that you can now focus on treating your disease. Please don't hesitate to reach out if there is anything the Foundation can do for you.

                    Take care,
                    Anne1 week ago

                  • RubyredThank you so much Anne, 1 week ago

                  • DBlessedHi Rubyred, I am sorry you have just discovered this. I have often wondered if my old Nephrologist did me a disservice by not identifying a mass I had in my kidney several years before my diagnosis. In saying that, I will lift you up in prayer for I know how I felt when I looked up what LAM was after my initial consultation. I am able to take comfort in the fact that my Lord is in control of my life and not the LAM! That may sound simplistic but in the 23 plus years I have followed Him, I have found that He comes through at the most desperate of times. Like Anne said, I am glad you have finally gotten a definite diagnosis and if it wasn't for the LAM Foundation's resources I would not have as good a grasp on this as I do. There is a lot of new information you will need to learn but you can do this, I have confidence in that. It took me over 2 weeks to just pronounce the name correctly!! You don't have to do it all today. I hope you have a non-complicated recovery and I hope you can rest regardless of the additional information you have learned. 1 week ago

                  Jessbo

                  Jessboasked the question: Liver

                  Hi, I have recently had some liver scans done and am awaiting results however might have some spots or something on it.. has anyone else ever had liver issues? I have been on sirolimus for almost 9 years now

                  1 week ago

                  DBlessed

                  DBlessedanswered the question Joint Pain

                  Hi Marna, I have been on Sirolimus for over a year now and yes, I do have joint pain primarily in my hands. Never had arthritis pain before but pain in my hands did start shortly after the medicine was started. The package insert on Sirolimus does list …
                  ro also answered the question ro also answered the question

                  1 week ago

                  pookie

                  pookie

                  Hi all. A funny question. I was diagnosed about 4 years ago. I'm the only case they have ever seen so have no idea most of the time how to deal with me ! Even with a collapsed lung my oxygen stats are 98+ which they can't understand. But I still can't breath properly and feel like someone is sat on my chest.
                  I have pain every day and at some point in every day I feel like someone is holding a wet cloth over my mouth .this can be for anything from 10 mins to a few hours and it even wakes me up.and they still won't give me any oxygen at home.
                  Is this normal to feel like this ? As I don't know anyone else with lams to ask.

                  1 week ago

                    mahmoud anwar

                    mahmoud anwaranswered the question Lam specialist

                    thanks , Anne What about in Egypt It's correct that this disease has no cure
                    Anne McKenna - Community Manager also answered the question Anne McKenna - Community Manager also answered the question

                    1 week ago

                    mahmoud anwar

                    mahmoud anwarasked the question: Lam specialist

                    hi Today the doctor told to me that my sister Has thyontom of lam and my question is There is any doctor in the Middle East who specialist to confirm the disease I got shocked when I read about this disease And I'm worried about my sister Kindly …

                    1 week ago

                    maria pearson

                    maria pearson created the event An Evening of Hope 2017, Buffalo, NY

                    Join the WNY Friends of the LAM Foundation for ‘An Evening of Hope.’

                    Together we’ll raise awareness for Lymphangioleiomiomatosis (LAM) and raise funds for The LAM Foundation



                    Date: Saturday, February 11th, 2017

                    Time: 7:00 – 10:00 PM

                    Location: Asbury Hall at Babeville 

                    Address: 341 Delaware Avenue, Buffalo 14202

                    2 weeks ago

                      Mayra

                      Mayra

                      Hello well to be honest nervous I have been told that I could have this disease waiting on the blood work but Dr says my my lungs looks like Swiss cheese with very little lung tissue. I have been going told since 2014 I have cypst on my lungs but oh don't worry it's not a big deal. To my surprise this good lung Dr now treating while I'm in the hospital says to me on Sat that it's very concerning, and explained this lam disease. So to be honest I'm scared, but now no why getting into the shower I would be short of the breath. I idk I'm just feeling down waiting on these results. The Dr also said my ct scan could be used for studies that how bad it looks. So I'm like omg thank goodness I came in the hospital when I did. Thank you for reaching back out to me, and sorry if I'm whinning

                      2 weeks ago

                      • Click to View All Comments5 comment(s) -
                      • Anne McKenna - Community ManagerLisa - you're too sweet. It was my pleasure to talk with you and I'm so glad I could help. :) I hope you're doing well! 2 weeks ago

                      • ThesYes, Anne has been a great help. I'm still in the process of trying to get a diagnosis, but with the CT scan they're pretty sure I have it. My insurance is giving me a BIG problem and not approving me to go to a LAM clinic since it is out of state. Long story...I'm completely frustrated. I still went and saw a LAM specialist despite the insurance and he is puzzled as to why I'm on the oxygen. My FEV1 is high, but my DLCO is low. He thinks maybe something more is going on than just the LAM. I just had a work-up done on my heart and everything seems normal. But I have chest pressure/heaviness/pain and my oxygen levels are very inconsistent. Lately, my O2 has been dropping to low 80s walking to my car from work...even while wearing the oxygen...but I'm not short of breath. Has anyone had this happen to them? I'm really trying to figure out why I have the chest pressure...I've been checked and there's no pneumothorax. I've been an emotional wreck just trying to figure things out. It HAS to get better! 1 week ago

                      • DBlessedIt can be overwhelming at first when you find this out about LAM but I too feel for you and understand the aching in your heart and that you don't need insurance hassling you at this juncture. I was diagnosed with LAM in Sept of 2015 and there were a lot of things going on with me as well. I am on oxygen as well and some days are better than others as for as how much oxygen I need and use. I have purchased an oximeter for about $50 to help me with that. You would think that this would be consistent but for me it depends on how tired I am. My FEV1 and FVC are good, in the 90's% range but my DLCO is running very low so I am not exchanging oxygen for carbon dioxide very well so that is why I require oxygen. I can some days bathe without O2 and other days it is very difficult and need the extra help O2 can give me. I have learned much about insurance over the years and although I do not know what form of insurance you have or what company carries you I do know in order to get the necessary medical that I need I have had to appeal their decisions more than once. In fact, I have to do it yearly for one thing or another. I hope and will pray that things level off for you. If you need advise on how to go about an appeal I will do what I can but I am not an insurance expert. I have truly found that the Lord is an ever present help in time of trouble and I will keep you in my prayers. Dblessed.
                        6 days ago

                      maria pearson

                      maria pearson created the event LAM Education Meeting at UPENN

                      SAVE THE DATE

                      DATE: Tuesday, May 2, 2017

                      TIME: 6:00 - 8:00PM


                      Joining us for the evening:

                      Maryl Kreider, MD, MSCE (LAM Clinic Director)

                      Presentation: “LAM: Recent Clinical Updates” (Subject to change)


                      Vera Krymskaya, PhD, MBA





                      Presentation: “LAM: Recent Scientific Updates” (Subject to change)





                      Agenda will be provided later. Dinner and parking will be provided.




                      2 weeks ago

                        Tashi

                        Tashi

                        3 weeks ago

                          Pat R

                          Pat Ranswered the question Practice lung function with harmonica

                          Playing the harmonica should be fine for most LAM patients, but you should always check with your doctor to be sure. It's pretty much just deeper and more controlled breathing than you normally do. I have LAM, and I've been playing for 12 years now. I'm …
                          Anne McKenna - Community ManagerElisa also answered the question Anne McKenna - Community Managerand 1 other also answered the question

                          3 weeks ago

                          Elisa

                          Elisa

                          Hello everyone! Hope you´re having a good week.

                          I´m taking sirolimus and I know we are not supposed to eat soy.
                          I found some food products that have soy lecithin. I´ve done my best to eat healthy, but I do enjoy a bran/oats cookie once in a while. Besides everything we´ve heard about processed foods, do you know if soy lecithin affect while taking Rapa?
                          Thanks a lot!

                          3 weeks ago

                          itcecsa

                          itcecsaasked the question: Practice lung function with harmonica

                          I was diagnosed with LAM October. My doctor told me to keep exercising. So I am doing some regular light weight exercise. Today I saw a news saying that playing with harmonica can improve lung function. I am not sure if it's suitable for LAM patient.

                          3 weeks ago

                          Anne McKenna - Community Manager

                          Anne McKenna - Community Manageranswered the question Food choices

                          The typical foods that would fall into this category are any foods that contain soy. If you visit our Patient Resources page and scroll all the way to the bottom, you'll find a resource that talks about why women with LAM should avoid 'phytoestrogens' …

                          4 weeks ago

                          ro

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

                          I have both a Freedom Sling and a Camelbak for hauling Cs -- one for me and one for my walking partner. Depending on how far you walk will determine how many partners you need to help haul tanks for you. :) I can't see the Freedom Sling site on the …
                          BeverlySharleneD also answered the question Beverlyand 1 other also answered the question

                          1 month ago

                          maria pearson

                          maria pearson created the event Patient Benefit Research Conference and LAMposium LA

                          We welcome the LAM community, along with LAM researchers and clinicians, to gather in Southern California from November 9-12, 2017. Patient Benefit Research Conference and LAMposium LA will focus on finding new therapies or products that will offer benefit to women living with LAM in five years or less.

                          1 month ago

                            Anne McKenna - Community Manager

                            Anne McKenna - Community Managerasked the question: Participate in LAM Research

                            Want to participate in LAM research? We currently have a researcher who is looking for chyle samples. If you can help, please reach out to me at (877) 287-3526 or amckenna@thelamfoundation.org and I'll give you more details! If you have any questions, …

                            1 month ago

                            Anne McKenna - Community Manager

                            Anne McKenna - Community Manager

                            Want to participate in LAM research? We currently have a researcher who is looking for chyle samples. If you can help, please reach out to me at (877) 287-3526 or amckenna@thelamfoundation.org and I'll give you more details!

                            1 month ago

                              Jacqueline faith

                              Jacqueline faith

                              I always feel tired and out of breath... But im. Happy

                              1 month ago

                                MichelleLam

                                MichelleLam

                                Good Afternoon Everyone....My daughter is 18yrs old and was diagnosed 2 years ago with LAM. Any advice in how I can make her to be more positive with this illness?

                                1 month ago

                                • SharleneDHello Michelle,
                                  I am sorry to hear about your daughter, and I am glad you reached out with your question. The diagnosis of a rare disease is difficult, as you know. Thankfully, there is quite a bit of information available to us regarding LAM and, for me, staying "in the know" is one of the things I do to stay positive with this disease process. Although there is no "one size fits all" answer to your question, I am happy to share what has worked for me over the years.

                                  As I mentioned, I read everything I can find pertaining to LAM. One caveat here--make certain to read current information, as old literature and statistics can be quite discouraging. I also stay in contact with other LAM patients. Although it took me some time to reach out to others, nowadays, there are many women eager to talk and share their stories. Your daughter may find this approach helpful. And, if she's particularly interested in connecting with gals her own age, you might ask The LAM Foundation staff to get her connected. Your daughter is definitely on the young side for receiving a diagnosis of LAM. As such, I suspect that connecting with someone close to her age would be helpful--just to talk about whatever stuff comes up.

                                  Finally, another thing that has helped immensely in my quest to stay positive: exercise. In whatever form it may take on any given day, just move the body. It's good for the endorphins and it's good for the spirit. Anything. Just a bit of movement.

                                  I hope this is helpful to you, Michelle. Know that I am open to talking with you and/or your daughter any time.

                                  Again, thank you for posting your question. Hope to hear back from you. :)1 month ago

                                • Anne McKenna - Community ManagerMichelle,

                                  I'm so sorry to hear about your daughter's diagnosis but you have come to the right place to get the best information about LAM available. I'd encourage you both to check out the information on our website. If you have any specific questions, this is a great place to ask them. You can also reach out to me at the Foundation at (513) 777-6889. I'm happy to help in any way I can.

                                  Take care,
                                  Anne4 weeks ago

                                maria pearson

                                maria pearson created the event LAM/TSC Conference Series in Houston, TX

                                On Saturday, April 22, The LAM Foundation is partnering with the TS Alliance to host a regional education conference. This FREE day long educational meeting will be held at the Texas Training and Conference Center in Houston, Texas and will provide important updates on LAM/TSC research priorities as well as a forum for dialog about treatment and progress toward improving quality of life for those living with sporadic LAM and TSC. Women and families with sporadic LAM and TSC LAM are encouraged to attend.  

                                1 month ago

                                  itcecsa

                                  itcecsaasked the question: health products and supplement

                                  Is there any health products that's good for LAM patients, what about supplements? Thanks!

                                  2 months ago

                                  itcecsa

                                  itcecsaasked the question: Food choices

                                  I was told by LAM doctor to avoid eating estrogen and hormones food. Can someone give me a list of food in those 2 categories? Thanks!

                                  2 months ago

                                  maria pearson

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

                                  LAM Liaison Alvie Dupree is hosting a LAM Education meeting at Emory Saint Joseph's Hospital with LAM Clinic Director Srihari Veeraraghavan, MD, and Sue Sherman, The LAM Foundation's Executive Director.

                                  Women with LAM, family and friends are all welcome to join us for an afternoon gathering to learn about LAM research, news from the Foundation and connecting to one another.

                                  2 months ago

                                    maria pearson

                                    maria pearson created the event LAM Education Meeting in La Jolla, CA

                                    LAM Liaison Patricia Ortiz and LAM Clinic Director Kamyar Afshar, DO, have put together a full agenda of multi-disciplinary presentations, you won't want to miss. Women with LAM, family and friends are all welcome to join us 

                                    2 months ago

                                      maria pearson

                                      maria pearson created the event LAM Education/LAMposium Planning Meeting at the NIH

                                      The LAM Foundation is hosting LAMposium in Washington, DC, for the first time on June 22-25, 2017. We are excited to partner with the Region 5 LAM Community to welcome women with LAM, family members and friends to Washington, DC. 



                                      We invite you to be a part of our team. Join us on Tuesday, December 13 at 5:00 pm at the National Institutes of Health (NIH) for an evening of education and a kick-off planning session for LAMposium DC. 



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



                                      Our success in Washington, DC, will rely on local enthusiasm, connections and partnerships. If you would like to be a part of the planning committee, please register below and tell us how you would like to participate. 

                                      2 months ago

                                        maria pearson

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

                                        LAM Liaison, Lynnette Weese is planning a LAM Education meeting at the University of Utah Hospital. Women with LAM, family and friends are all welcome to join us! 


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

                                        The meeting is free and light refreshments will be served.

                                        2 months ago

                                          Marna

                                          Marnaasked the question: Joint Pain

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

                                          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 scheduled Wednesday, December 14. Women with LAM, family and friends are all welcome to join us! 

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

                                          The meeting is free and light refreshments will be served.

                                          2 months ago

                                            maria pearson

                                            maria pearson created the event LAM Education Meeting in San Diego

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

                                            2 months ago

                                              maria pearson

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

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



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

                                              2 months ago

                                              • JPipitoLAMposium in DC!! That makes me so excited for it is only a couple hour drive for me :) 2 months ago

                                              maria pearson

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

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


                                              90's Prom to Benefit The LAM Foundation

                                              DATE: Sunday, January 15, 2017 

                                              TIME: 7:00 PM

                                              PLACE: Tin Roof Nashville

                                              ADDRESS: 1516 Demonbreun Street

                                              Nashville, TN

                                              3 months ago

                                                maria pearson

                                                maria pearson created the event Breath of Hope Gala

                                                SAVE THE DATE!



                                                Breath of Hope Gala

                                                Hyatt Regency Washington Capitol Hill

                                                400 New Jersey Avenue, NW

                                                Washington, DC 20001

                                                3 months ago

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