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11 hours ago

Trish

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

yes, i am on several other meds but the only two new medications in the past few years are sirolimus and spiriv and the cardiologist went through my list of meds and nutrition and couldn't find anything that could cause it. It was ruled out.

1 day ago

Hope7773

Hope7773

I have a question that been stirring in my mind that doesn't make sense to me. Is it possible to get infections more often when you have LAM Disease. I'm constantly sick since I have had this. So weak and lethargic. I can only rest night and through the day.
I don't see the specialist for further intervention into the LAM Disease until April 4th,2017.
By the way every drug and antibiotics. Do nothing. Took it for 17days. No response to medications. To help me feel better just got weaker and weaker.

If anyone can give advice I would appreciate it. I see us as all sisters supporting and loving each other.

2 days ago

    Thenewme2017!

    Thenewme2017!asked the question: Botox? Is it safe while on sirolmis?

    Botox? Is it safe to get injections while on sirolmis? Anyone had a negative experience or positive?

    3 days ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Manageranswered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

    Thanks for your question. What kind of body changes have you experienced? How have they changed your life? Thanks, Anne

    3 days ago

    Trish

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

    I wonder if someone on this forum has a similar experience I have with onset of cardiac arrhythmias as LAM progresses. I have always been very athletic and still exercise a lot but over the past years have experiences increasing levels of heart …

    5 days ago

    maria pearson

    maria pearson created the event Tee it up for LAM! Chicago, IL

    Golf Outing to benefit The LAM Foundation


    Golf Outing with Lunch, Golf Games, Dinner and Silent Auction

    1 week ago

      maria pearson

      maria pearson created the event LAM Education Meeting in Boston, MA

      The LAM Foundation and Brigham and Women’s Hospital invite you to attend a special patient & family meeting.

      Please join us to hear the most up-to-date research and clinical advances in diagnosing and treating LAM.

      1 week ago

        maria pearson

        maria pearson created the event McCabe Pub 5th Annual Crawfish Boil, Nashville, TN

        If you live near Nashville, TN, mark your calendar and join the Dean family for the 5th Annual McCabe Pub Crawfish Boil.  Saturday, May 6, 2017 at McCabe Pub. Proceeds benefit The LAM Foundation.

        1 week ago

          maria pearson

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

          You are invited to a very special LAM Education Meeting.

          Saturday, April 8, 2017 at the Loyola Stritch School of Medicine


          Please join us as we welcome a panel of experts from the Loyola LAM Clinic to discuss concerns related to LAM treatment, care and management.  

          1 week ago

            ktlammie

            ktlammie

            I'm doing okay, all things considered. I'm a long term lam pt, but just now joining 360 group. I was on the listserve for several years, but that has been quite a while. How are all of you?

            2 weeks ago

            maria pearson

            maria pearson created the event LAM Day on Capitol Hill. Washington, DC

            Make sure your voice is heard. Join The LAM Foundation as we meet with members of Congress and help them understand LAM and what it means to live with the disease. On Thursday morning, we will hold an in depth training session where you will learn how to share your LAM journey with your representatives on Capitol Hill. On Thursday afternoon and Friday morning, join the LAM community as we put that training to use and “March on the Hill” for meetings with as many congressional representatives as possible. 

            3 weeks ago

              maria pearson

              maria pearson created the event "Genetics in TSC and LAM" LIVE Webinar

              Join us for a FREE webinar set up by ATS, The LAM Foundation and the Tuberous Sclerosis Alliance. Tuesday, March 7, Genetic Counselor III,  Jennifer Glass, MS, LGC, CGC of Cincinnati Children’s Hospital Medical Center, will present and lead a discussion on, "Genetics in TSC and LAM". This webinar will take place at 4:00 pm EST.


              Everyone who attends will have the opportunity to ask questions and participate in the discussion.

              3 weeks ago

                maria pearson

                maria pearson created the event Patient-Focused Drug Development (PFDD) Meeting, Washington, DC

                Join The LAM Foundation and the TS Alliance on Wednesday, June 21 for an interactive and informative meeting with the FDA where patients will share what matters most to those with a rare disease and what treatments are needed. Representatives of the FDA will be present to hear the patient’s voice as they continue to work on developing and approving new drugs. All are welcome to join us in person or through an interactive webinar.

                3 weeks ago

                  maria pearson

                  maria pearson created the event LAM Week at American Thoracic Socieity

                  March 5 - 11 the American Thoracic Society (ATS) will feature lymphangioleiomyomatosis (LAM) and The LAM Foundation for their Rare Lung Disease Week. A highlight of the week is a FREE webinar set up by ATS, The LAM Foundation and the Tuberous Sclerosis Alliance. 

                  3 weeks ago

                    DBlessed

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

                    Your welcome Tashi, I enjoy research so I do hope it helped. I edited my first reply. I do NOT receive financial benefit so I said all that about vitamins because I have found them beneficial not because I receive anything from it. Sorry about the …
                    TashiroN Gupta also answered the question Tashiand 2 others also answered the question

                    3 weeks ago

                    ro

                    roanswered the question Joint Pain

                    http://www.webmd.com/food-recipes/features/anti-in... An anti-inflammatory diet might be worth investigating, since inflammation can be the source of joint pain. I attached a general article about it on webmd
                    DBlessedMKB also answered the question DBlessedand 1 other also answered the question

                    3 weeks ago

                    FXM

                    FXManswered the question Newly diagnosed symptom quesiton

                    This is called plastic bronchitis. It occurs when chyle (lymphatic fluid containing fat and other nutrients) spills into the airway and hardens, much like Jello solidifies in a mold. I have seen this happen in a few other LAM patients, and it happens in …

                    3 weeks ago

                    Mickie

                    Mickieasked the question: Newly diagnosed symptom quesiton

                    Hello, I have been recently diagnosed last summer while back in the U.S. and have very limited access to health care as I have relocated living in South East Asia for work, so I'm unable to ask a qualified health professional about a suspected symptom. …

                    3 weeks ago

                    Melita

                    Melita

                    Anne, hi!

                    So I know I'm not good for computers, LOL, but I can not find where to put my picture, and where to accept your friendship or invite others

                    Help? please?

                    3 weeks ago

                    • Anne McKenna - Community Manager
                      Hello my friend!

                      Here are some easy instructions:
                      - Log into the site.
                      - In the upper right corner, next to the search box, click on the arrow menu next to your screen name.
                      - Choose "Edit profile".
                      - Go to the very bottom of the page and click on Preferences. In there, you will be able to add a short bio and a photo.

                      If you have any questions or need additional help, let me know.

                      Good luck!
                      Anne3 weeks 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. …

                    4 weeks 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.

                    4 weeks 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.

                    4 weeks ago

                      maria pearson

                      maria pearson created the event ATS Conference in Washington, DC

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

                      4 weeks 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

                        4 weeks 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

                          4 weeks 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

                            4 weeks 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

                              4 weeks 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.




                                4 weeks 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 month 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 month 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 …

                                    1 month 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

                                    1 month 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 …

                                    1 month 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 …

                                    1 month 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 month 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 month ago

                                    • RubyredThank you so much Anne, 1 month 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 month 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 month 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 month ago

                                      mahmoud anwar

                                      mahmoud anwaranswered the question Lam specialist

                                      thanks , Anne What about in Egypt It's correct that this disease has no cure

                                      1 month ago

                                      Anne McKenna - Community Manager

                                      Anne McKenna - Community Manageranswered the question Lam specialist

                                      Hello, I'm so sorry to hear about your sister but hopefully we can connect you with someone who can help. Please try contacting Dr. Jeffrey Chapman at the Cleveland Clinic in Abu Dhabi. You can reach him by email at ChapmaJ@ClevelandClinicAbuDhabi.ae . …

                                      1 month 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 month 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

                                      1 month 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

                                        1 month 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! 1 month 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 month 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.
                                          1 month 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.




                                        1 month ago

                                          Tashi

                                          Tashi

                                          1 month 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 …

                                            1 month ago

                                            Anne McKenna - Community Manager

                                            Anne McKenna - Community Manageranswered the question Practice lung function with harmonica

                                            itcecsa, Was the article you saw this one? ( http://healthblog.uofmhealth.org/health-management... ) If so, this group is led by our very own Pat R., who is a LAM patient. Playing the harmonica can be extremely therapeutic for someone with LAM! Have …

                                            1 month 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!

                                            1 month ago

                                            Elisa

                                            Elisaanswered the question Practice lung function with harmonica

                                            Hello! As far as I know, there are other LAM patients taking harmonica lessons! Sounds super interesting as a fun pulmonary rehab activity! I was diagnosed December 2015. My doctor also told me to keep exercising. I started jogging and swimming. At …

                                            1 month ago

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