Mary Stojic

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

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

2 hours ago

KWB

KWBreceived the badge Getting started

Earned the Getting started badge!
AnnyrplayinMN to TXand 468 others also received the badge Annyand 470 others also received the badge

6 hours 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

2 days 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 days ago

    csirke

    csirke

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

    1 week ago

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

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

      Take care,
      Anne4 days 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

    1 week 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 …

      1 week 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 …

      2 weeks ago

      Beverly Holtzman

      Beverly Holtzman

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

      2 weeks 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,
        Anne1 week 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 weeks 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 weeks 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 weeks 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 weeks 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!
          Karen KAnne McKenna - Community Manager also answered the question Karen Kand 1 other also answered the question

          3 weeks 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 weeks 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. …
          roBeverlySharleneD also answered the question roand 2 others also answered the question

          3 weeks ago

          KikiB

          KikiBasked the question: LAM, Type 2 Diabetes

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

          3 weeks ago

          Karen K

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

          One of the side effects of Rapa can be an elevated heart rate. I have been on Rapa for 5 years, and recently began dealing with this issue. I also take another medicine that also can elevate my heart rate. Awhile ago, I changed the time I took Rapa so I …
          Trish also answered the question Trish also answered the question

          3 weeks 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 …
          orchidDBlessed also answered the question orchidand 1 other also answered the question

          3 weeks 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 weeks 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 weeks 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 weeks 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,
            Anne1 week 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.

          1 month ago

          • Click to View All Comments4 comment(s) -
          • DBlessedHi again Hope 7773,
            My message got cut. I don't know if they are starting to limit how much you can share but I think how you feel is important to address,
            Besides better nutrition, targeted medications for some of my issues and adequate sleep, the major thing that has helped me the most in the past is using a step wise approach in handling all this and getting into the pool and learning to do Ai Chi. Hydrotherapy is great for people who are struggling to overcoming serious health issues because the water helps in a couple of ways. First, it reduces the impact on the joints and muscles and secondly, the gradient pressure of the water on the body gives some much needed help to the lymphatic system and to a lessor degree the circulatory system. I have used graded exercise, which means I do not push myself beyond my reasonable limits. If I should do that, I end up back in bed for as long a week or more trying to recover. I had a physical therapist in the beginning to help me with that. My first goal was to get out of bed and get cleaned up and dressed and to make it to the car. Once I could do that, I added getting to the pool and just getting in and slowly moving around. At this point the physical therapist took over and lead me the rest of the way. If you do not have access to a warm pool, the LAM Foundation has a great resource under "Newly Diagnosed." Once there click on "Patient Resources" and under that you will see "Exercising To Maintain Healthy Lung function." The last time I had a flare I actually started with exercises like these, doing only a few and slowly building up to where I could do more reps. Again, the physical therapist taught me how to do gradient exercise and how to tell when I had done all that I should. But it was over 18 years ago that I had to start with the very basics. In the past, I have gotten so far down that I truly wondered if I would ever come back up. Fortunately I did each time I have had a major set ba ...4 weeks ago

          • DBlessedHi Hope,
            that is I did each time I had a major set back. If you would like more information on the Step Wise Approach you can download a free copy (4 pages), from the Hunter-Hopkins website. You do not have to have ME/FM/CFIDS to benefit from the approach. This was developed for very ill people who were struggling with body pain and severe exhaustion, which made getting out of bed the greatest challenge to their day. Years ago I incorporated these principles into my life so that I could manage my ME and not allow my ME to manage me. This is a safe and accurate website that is not pedaling resources for money. Late last summer when I was able to get back into the pool, I slowly started to feel better and could finally see some improvement. Also, I have not had a chest infection except for the one I had after surgery when my defenses were likely low. Exercise is good medicine (so to speak). It stimulates the brain to release endophins which makes us feel better mentally and physically. My hope is that this gives you some encouragement and some new ideas that may work for you. Hopefully others will share and add valuable information for us all. Please feel free to contact me if you need clarification on anything I have said. Lastly, I pray the Lord touches you giving you peace and encouragement and that He will bring healing to your many difficulties. I do know He is ultimately the only One who can bring about something beneficial out of something tragic. To some that may sound simplistic, but through the years I have learned He is very real and very present and true to His Word.4 weeks ago

          • Anne McKenna - Community ManagerI'm so sorry to hear that you've been feeling so terrible. I think that you will find that seeing a LAM specialist will be very helpful. I would suggest making a list of the questions you have and things that are bothering you before you go so you don't forget anything while you are there. If you have any other questions, feel free to ask them of this group or give me a call at The LAM Foundation at (513) 777-6889. 3 weeks 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?

          1 month ago

          Thenewme2017!

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

          Body changes on sirolumis.

          1 month 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 …

          1 month 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 month 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 month 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 month 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 month 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?

                  1 month 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. 

                  1 month 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.

                    1 month 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.

                      1 month 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. 

                        1 month 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

                          1 month 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

                          1 month 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 …

                          1 month 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. …

                          1 month 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?

                          1 month 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!
                            Anne1 month 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. …

                          1 month 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.

                          1 month 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.

                          2 months ago

                            maria pearson

                            maria pearson created the event ATS Conference in Washington, DC

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

                            2 months 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

                              2 months 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

                                2 months 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

                                  2 months 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

                                    2 months 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.




                                      2 months 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.

                                        2 months 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 …

                                          2 months 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 …

                                          2 months 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 …

                                          2 months ago

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