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    June

    Name: Ritumehraa: ritumehraa@yahoo.com
    From:
    Found_SOS_Via: Internet Search
    Date: Wednesday, June 02, 2010 Time: 07:29 PM
    Comments:
    Hi, I am in process of diagnosis for my lacrimal (tear) gland swelling. I don't have any other symptoms, nothing, no cough, no shortness of breath, in eyes only tear glands are enlarged no dry eye nothing. Is there anyone who shares my experience. However, I have slight ache in my fingers and toes and tingling in finger tips, sometimes pain in my leg from knee to ankle and in arm from elbow to wrist. Sometimes I have sensations of pressure in my middle back it only lasts for a few seconds, it's like when you get up after sitting for long with support. I had a chest X-Ray today and have swollen lymph nodes but lungs are clear. Combination of XRay and lacrimal gland swelling suggest sarciodosis, I am scheduled for a chest CT scan after three weeks. I am dead scared I am 34 yrs old Asian female and still in a state of denial. I don't know at this stage, probably stage 1, should I go for steroid therapy and should I wait it over. I am really really scared and depressed I just don't know what to do how can I make it go away, I recently gave birth to my first child and now I have to face this I don't know. Is there any natural cure, any herb maybe wheatgrass extract? I was thinking about following it instead of steroids? Help! Thanks Regards Ritu


    Name: SheilaD: shesavka05@yahoo.com
    From: Missouri
    Found_SOS_Via: Physician Referral
    Date: Thursday, June 03, 2010 Time: 09:05 PM
    Comments:
    was just informed I had Sarcoid in May of 2010, am now taking 40mg prednisone daily , just don't know what to expect and am really scared of all the bodily changes that may happen, any one shed some light on what to expect for the next 6 mos?


    Name: Yasmin Hill: yth8248@gamail.com
    From: Atlanta
    Found_SOS_Via: Support Group Database
    Date: Saturday, June 05, 2010 Time: 10:58 PM
    Comments:
    I was first diagnosed in 1999 @University of Michigan in Ann Arbor. Unfortunately I moved to Atlanta in 2000 where I have found it difficult to find satisfactory health care. For the past 2 years I suffered with terrible headaches, loss of vision, joint pains, chronic sinusitis and fatigue. At my insistence I was referred to a Sarcoid Center and saw Dr. Marc Judson @Medical University of South Carolina. He is a godsend. My disease is mostly extra-pulmonary (outside my lungs) including brain, eyes, sinuses, liver, lymph nodes, joints, skin and maybe heart. Dr. Judson understands this disease as a multi-organ protean masquerader. The good news is that there are therapies other than prednisone. I recently started on infusions of Remicade. I reviewed the studies with Remicade and they look good. Physicians like Dr. Judson are continually looking for therapies for sarcoidosis and he is hopeful of continued advancements. So, my suggestions to those who posted in May are that for this disease you have to take control, insist on seeing a real expert preferably at a Center of Excellence. To paraphrase my first e-mail from Dr. Judson " you have a bad disease but I think we can control it" So don't give up....take control of your health care and beat this disease.


    Name: Lena Richardson: sweetsbylena@yahoo.com
    From: Apopka, fl
    Found_SOS_Via: Internet Search
    Date: Wednesday, June 30, 2010 Time: 04:00 PM
    Comments:
    Hello Everyone, I have not posted in a long time. I am back on Pednisone. Whoohoo, Yall know that I really mean the opposite of that. Anyway, I am so tired of this disease. Just an update for our new friends. I have Sarcoid in my lungs, eyes, chest, and stomach. Oh and it has also given me arthritis in most of the joints in my body. Just feel like crap most of the time. Now it has gotten worse in my lungs. So that is why I am back on Prednisone. I am not going to let it beat me. Oh by the way I think that stress can cause a relaps. So try to stay stress free if you can. Oh and watch what you eat. Try to eat as healthy as you can. Also keeping your weight under control can help also. I have done all of these things in the last 3 years and they really helped me. Came into some very stressful times in the last 6 months. Now I am having a flare up. I think that there is a link. God Bless Everybody, Lena


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    July

    Name: Melissa: mamart1171@hotmail.com
    From: Santa Clara, New Mexico
    Found_SOS_Via: Internet Search
    Date: Sunday, July 11, 2010 Time: 12:40 AM
    Comments:
    My brother was diagnosed with neurosarcoidosis in April 2008 and his conditions has deteriorated significantly to the point where he is completely dependent on care, including feeding. I am trying to find more info, anything, he is 46 years old.


    Name: Prem Varma: ppvarma@gmail.com
    From: Mumbai, India
    Found_SOS_Via: Internet Search
    Date: Monday, July 12, 2010 Time: 07:39 AM
    Comments:
    I have been suffering from sarcoidosis since last 3 years. Diagonosis took about one year after several tests of TB, cancer and other. It affected my lungs, skin and eyes.( Joints are paining but yet to be confirmed for sarcoidosis). At present I am continuing with medicine and as per my chest x ray lungs are clear. There is no sign on skin . I have been operated for cataract and vision is repaired. But now my almost all joints are paining specialy right hand and left knee. Can any body suggest what I should do. Since I am in Mumbai, India I need a doctor who is well aware of sarcoidosis.


    Name: Dell Hodges: Dhodges39475@aol.com
    From: Purvis, MS in southern Mississippi
    Found_SOS_Via: Internet Search
    Date: Wednesday, July 14, 2010 Time: 12:05 PM
    Comments:
    I was first told I might have sarcoidosis in the late 80's and was confirmed by lung bio in 2006 in my lungs and lymphnoids I wanted to add a note about something with the congestion in my lungs that seems to have really helped with my breathing (I am on oxygen 24/7) it is called Himalayan Salt rocks and is heated with a small bulb like a Christmas light bulb it helps dry the congestion maybe it will help someone else, and is all natural aide.


    Name: Margaret: dorismac2@yahoo.com
    From: Reno, Nevada
    Found_SOS_Via: Internet Search
    Date: Wednesday, July 21, 2010 Time: 01:22 PM
    Comments:
    I have sarcoidosis in my lungs -- after 5 years it seems to be in remission-- am off prednisone-- now I have these rough grainy spots showing up on my body, I was wondering what sarcoidosis on the skin looks like -- I don't know a dermatologist here in Reno who knows about sarc. -- any help will be appreciated. Margaret


    Name: Lonnie Simms: dad_fireman_son@sbcglobal.net
    From: ILLINOIS
    Found_SOS_Via: Internet Search
    Date: Friday, July 23, 2010 Time: 07:30 PM
    Comments:
    I am a white male, and turned 60 this year. I had red skin lesions from my ankles to my knees. I had a lung biopsy 7 yrs. ago and was told I had Sarcoidosis of the lungs and chest lymph nodes. I was also told not to blame every ache or pain on Sarcoidosis. It seemed that mine goes in stages. I would have a week of dizziness, then a week of blurred vision, a week of nausea, a week of joint pain and a week of shortness of breath. After the stages I felt OK for a few weeks then the stages would start over again. Now they are lasting and I am just getting a few days of feeling like I can function. My wife vibrates my back and legs but my skin hurts and is very sensitive. On my days off work I have stayed in bed for 3 days at a time forcing myself to go to work. I have worked since I was 12 years old and can count on the first few fingers times I have ever called off work. Now my body feels like I have a charlie horse in my chest, in my legs and my legs are so weak. I have never been on medication for my sarcoidosis and was told there is really nothing that works. I am going to contact the doctor who did the biopsy, I need to see if there is anything new that has developed. Since last summer I now sweat profusely, summer and winter. I am exhausted and restless all the time.


    Name: Dynodump: dynobell@go.com
    From: New York
    Found_SOS_Via: Linked Site
    Date: Wednesday, July 28, 2010 Time: 03:20 PM
    Comments:
    I was diagnose over 24 years ago of having sacorid and it never was active; recently I was told it is active and I still do not have any symptoms thank GOD. I just want you to know don't worry everything will be ok. I live a normal life with no meds. I thank God for that. Keep thinking positive and keep your head up. If you are not having not active symptoms live your life, but continue to get monitored and check for any new news on this disease.


    Name: Teresa Greisman: terig@ymail.com
    From: Toronto, Canada
    Found_SOS_Via: Internet Search
    Date: Saturday, July 31, 2010 Time: 07:38 AM
    Comments:
    help! I have had sarcoid, right orbit, since Oct. 2006 methatrexate 2.5 x 8 weekly, I have recently had severe back pain ... spine...with soreness around both sides to ribs, xrays show some arthritis in lower spine...some abdominal pain, it feels like my ribs are on fire and something is pressing down my spine.. any thoughts on tumor in spine? will have MRI sometime this month.


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    August

    Name: Tammie Carter: carter872@comcast.net
    From: Harrisburg, PA
    Found_SOS_Via: Internet Search
    Date: Wednesday, August 04, 2010 Time: 02:12 PM
    Comments:
    I was diagnosed with Sarcoidosis in June of 2010. I had been dealing with several issues at the time of my diagnosis but none of them meant anything at the time. I had a tumor on my right index finger that just kept growing. A few months and it tripled in size and I had it removed. The pathology report should granulomas and my Ortho told me to get to my primary care asap. I automatically though I was dying or he was overreacting. Then I went home a researched Sarcoidosis. My swollen ankles, extreme fatigue, joint pain, weakness, weight loss, back pain all made sense to me. I went to my primary who told me that I did not look like a sarcoid patient but sent me for a battery of tests. I came back a week later and the diagnosis was confirmed with an xray. I had lost 35% of my lung capacity and since the granuloma was located outside of the lungs, he was more than positive that the disease was at stage III or IV. My ACE was 147 and the other tests were not looking any better. He prescribed Buspiron, Advair, Ventolin, Tramadol and the other meds I take for diabetes. We started on a 40mg dose of methylpredlisone for a week to see if it was going to help. It helped the cough but did a number on my mind. I had insomnia, couldnt eat, felt euphoric one minut and deeply depressed the next. I have not seen him since them because his schedule was booked. I am supposed to see him tomorrow along with the cardiologist. Since my last appointment, I have had some very strange things happening. I will cough and cough until I vomit and it feels like the elaphant that was sitting on my chest just got up. Two times this has happend. I have tremors on the left side of my body. I drop coffee if I use my left hand. My knees, elbows, ankles and feet hurt if I sit for any period of time. now all my days are not bad but when I do have a good day, I pay for it the next day.I am just tired and scared most of the time. There are people who die from this and I know that my doctor is not a specialist. I have not been referred to a pulmonary doctor yet. No ct, pet or mri to see how this disease has spred. I need a better solution than medication. Someone needs to tell me what to expect, where the disease is, how to control it, when will it be over and who can help me. If you are familiar with the central PA area (Harrisburg) please help. Any and all suggestions are helpful. It is nice to know that I am not alone. (Funny thing - I called the cardiologist today to confirm my appointment and she asked why was I coming to see them. I answered Sarcoidosis. She said huh...what the hell is that.) Just goes to show that this disease is not as well know as they think.


    Name: Linda MacBay: lmacbay@yahoo.com
    From: South Carolina
    Found_SOS_Via: Internet Search
    Date: Wednesday, August 11, 2010 Time: 12:46 PM
    Comments:
    Does anyone else have extreme nerve pain on their legs from the lesions? My diagnosis was three or four leg lesions and now, several years later, my lower legs look like somebody beat them with a bat and they feel that way too. Very painful when sarcoidosis is active especially. Always tender to the touch. My ankles swell and hurt. Diagnosed with severe asthma, but I swear it is sarcoidosis in my lungs, not asthma as asthma meds do not help. Or at least I feel like they don't. All has caused me to be very inactive, which has led to disability and can't hardly walk now. Is there anyway to lessen the pain and dryness? HELP!?


    Name: terryjk: tjnewday@yahoo.com
    From: michigan
    Found_SOS_Via: Internet Search
    Date: Wednesday, August 25, 2010 Time: 05:25 PM
    Comments:
    i have had sarcoidoisis since I was 15 (lung) I am now 54 was treated with prednisone I have many other ailments and now something is wrong with my adrenaline glands...everything I have had has been "odd" and hard to diagnose...I have also had pulmonary embolisms...I did alot of research on my own, (who knows our body better than ourselves?) and thanks to that some tests have been done and a mystery I feel is about to be solved. my dr called me today and told me to come in because a blood test I ask for came back abnormal...search and search for your answers then take what you find to your dr. to get the help you need.


    Name: art36mat: art36mat@yahoo.com
    From: arizona
    Found_SOS_Via: Internet Search
    Date: Saturday, August 28, 2010 Time: 09:27 PM
    Comments:
    I was diagnosed last July with Gastric sarcoidosis (supposedly very rare) After gallbladder removal, several stays in the hospital to being told i have stomach cancerl. Its really been a roller coaster. Several Ct cans, MRis, endocospies, endocospic ultrasounds with biopsies. determined gastric sardoid. the only treatment Prednisone i just find that hard to believe. Ive been searching everywhere for an alternative and cant find on. It seems everytime i go for a check up they give another medication. Prednisone, azathioprine, bactrim every 2 months, vitamin d and B. Its gone to my pancreas now i have chronic pancreatisis creating back pain, prednisone causing emotional changes, trying to work and have a life. Its really tough.


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    September

    Name: anna walth: awalth1@yahoo.com
    From: fargo nd
    Found_SOS_Via: Newsletter
    Date: Sunday, September 05, 2010 Time: 02:55 PM
    Comments:
    i have sarcoidosis


    Name: Donna Black: dkblack@tds.net
    From: Sugar Tree, Tennessee
    Found_SOS_Via: Internet Search
    Date: Saturday, September 11, 2010 Time: 02:46 PM
    Comments:
    Hello. I have recently been diagnosed with sarcoid. Interested in learning more about it.


    Name: Amy Gillahan: arstough@comcast.net
    From: Tennessee
    Found_SOS_Via: Internet Search
    Date: Wednesday, September 22, 2010 Time: 06:04 PM
    Comments:
    This is my first time posting. I believe that I have has sarcoid for about 12 years. Was diagnosed about 9 ago with a lymph node biopsy. I dont go to the doctor much, only when symptoms are too much to bear. I know that if I would go more regularly I might get more answers to this disease. I dont have any lung involvement, none of my organs are affected. I do have severe chest pain-like an elephant is sitting on my chest. It literally makes me sick and I feel like I cant breath. The joint pain is unbearable if I do any type of activity that puts any type of stress on them. I also have problems with my skin-I dont think this is sarcoid lesions, as they are not sores...upon researching the internet I believe that I have delayed pressure urticaria. Maybe that is caused from my sarcoid. I plan to go see a doctor at Vanderbilt University who specializes in sarcoidosis research. Maybe I will have some luck with her. I refuse to go on steroids or methotrexate-as I have seen the effects on family memebers from long term use of either of those medications and its just not worth it. I feel like I am trapped by my own body. If I do anything fun or the least bit physical - I suffer the whole next day. Would love to hear from you guys.......A


    Name: Sami Jackson: samiann@msn.com
    From: Houston, TX
    Found_SOS_Via: Internet Search
    Date: Thursday, September 30, 2010 Time: 08:34 PM
    Comments:
    I was diagnosed with Sarcoid in April 09. I spent a month in Critical care in Knoxvlle, TN. UT Mdical actually knows a lot about this. I was also lucky in at I was put with a Dr that was well versed in Sarcoid. When I entered Hospital I had VERY high blood pressure, leasions in and on my liver, kidneys, stomach, skin and lungs. My lungs aappear that I have cancer but they are just granulonias. I also had blood clotts in my lungs. I am in stage 3. The only thing that I had ever had was allergies and COPD. About a year before it realy hit I started having small sores that just would not heal. I went through three surgeries and I live with a lot of pain. It has settled in my joints, I have RLS and lots of skin problems. I cannot not breath well and stay tired. The only treatment is steroids. There is no remission but it does flare at odd times. I take Celexa to help with the depression, Requip for the RLS. Nexium for the stomach, Ambian to sleep. Hydros to get through the day, Narvasc to keep my BP in check. I know that this sounds like a lot but when I came out of Hospital I was on 17 different meds. I only take steroids when Bronchitus hits. There is no cure for it and I have to be very careful about my liver, kidneys and lungs. Breathing treatments help me more than anything. My eyesight is also failing. They believe that I have brain involvment but can't tollerate the CT's. And on top of all this I can no longer function in jobs and really hate to be around people. Extreme panic attacks. I will be 55 in Nov. I can't get disability because I am too educated and have no insurance. But hey ......life is still a gift and I live each day to the fullest. Oh yea ....As large as Houston is there are only 11 Dr's that know about it enough to treat it. Ain't life grand????


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    October

    Name: Suzan Iwerks: siwerk@aol.com
    From: Fayetteville, NC
    Found_SOS_Via: Internet Search
    Date: Friday, October 01, 2010 Time: 07:27 PM
    Comments:
    I was diagnosed for two years by my pulmonologist as having asthma, and treated for that. Before I had back surgery 4 years ago, I did the preop tests and was told that my surgery would have to be postponed as my chest Xray had shown abnormal content. It was cloudy with what I now know is called the "ground glass" effect. My surgeon required I have a biopsy and my pulmonologist did a mediastinoscopy. I had calcified lymph nodes and was diagnosed then with sarcoidosis. As I understand it, I do not fall into the typical patient category, as I was almost 60, Caucasian. I have been treated since with methotrexate, Prednisone and inhalers. The symptoms get worse as I am not able to breathe well with exertion. I still work full time and the most dreaded part of my day is getting into the building from the parking lot, which is a little distance. Once I get into my office I am ok. Housework is difficult, as I do one thing and have to recover for a few minutes. I get frustrated as I have always done for myself and now have to ask for help. My two dear grandchildren don't have the quality of interaction I would like, and heaven forbid I should need to chase one down. I am disappointed that my life has turned out this way, but I also feel blessed that at least for now I do not have symptoms in any other organs. I insisted on an echocardiogram to make sure this gasping and hard breathing was not affecting my heart. I think I know when something started, and it was before my diagnosis that I had a two week seige of bronchitis which was severe and kept me bedridden. I think whatever got into my lungs happened then, and the granulosa began developing to encapsulate the virus, or bacteria, or whatever it was. I had nothing like that before. Would love to hear if you feel you might know the origin of your sarcoid.


    Name: Kevin68: klw06a37@email.cpcc.edu
    From: Charlotte, NC
    Found_SOS_Via: Online Chat Group
    Date: Monday, October 11, 2010 Time: 01:38 PM
    Comments:
    My best friend was recently diagnosed with Sarcoidosis or Lymphoma. I mean they have been unable to confirm a diagnosis. They are leaning toward Sarcoid. He currently only has Splenic involvement with some enlarged lymph nodes. The only accessible node is in the groin. He has been on Prednisone for about 2 months and is weaned off the regimen. He had a complete blood count performed today and his hemoglobin was high along with his white count. His overall white count was low. He has been extremely fatigued and could sleep most of the day. I am trying to find a sarcoid specialist in the US to consult. To date he has been working with local specialist who don't seem to have a good grasp on this illness. I would also be interested in knowing if there are any resources about nutrition and homeopathic remedies. With sincere thanks, Kevin


    Name: Candy Dykes: kandyd123@yahoo.com
    From: kandyd123@yahoo.com
    Found_SOS_Via: Internet Search
    Date: Wednesday, October 13, 2010 Time: 10:21 PM
    Comments:
    I was initally diagnosed with a tumor on my spine but found to be granulomas that acted as a tumor. I have been seeing doctors since 1998 and they still cannot determine if I have MS or Neuro Sarcoidosis. I was put on steriods immediately which took care of the tumor so there was nothing to biopsy. I will not allow anyone to go into my spine. If I have sard - it is within my spine w hich is extremely rare and no one seems to know what to do. It is thought I may have MS I truly believe it could be BOTH. Have been on steriods since 2008, decradon (highest dose) for 18 months. Terrible side effects. Taken of decradon, had a horrible crises - was admitted to MUSC, every test uner the sun done, but was not able to determine if MS or Neuro Sarc. I am now on Prednisone and Imuran. Thought is was working, but have been having problems with my left leg. Pain in upper thigh and hip, wants to buckle when I get up to walk. Called my doc at MUSC and he upped my Predsione and Imuran. So far no luck, things are getting worse. When I became ill initially, the pressure on my spine has caused me to have loss of sensation in my lower body (can stick me with a pin and I won't fill it). I thank God I can walk and drive when doing ok. Problem is if I get a cut, I don't know it, and i habe to be very careful of infections. In all the messages I have read throughout the web, no one has experienced what my problem seems to be. Doctors don't now what to do with me since they can't reach out and touch my illness. No other organs involved at all. Wish I could find a doctor who really wanted to take my case and try to figure out what is going on and if MS and Sarcoidosis, make that decision and work on a plan to help.


    Name: sivaraman Murali: smurali40@hotmail.com
    From: UAE
    Found_SOS_Via: Internet Search
    Date: Saturday, October 16, 2010 Time: 06:02 AM
    Comments:
    I was diagnised sarcoid and treated with cartico steroid but recently got remission. I need support and benefit from this group.please help MURALI


    Name: Timsimba: Eclipsetalon1@gmail.com
    From: Florida
    Found_SOS_Via: Internet Search
    Date: Saturday, October 16, 2010 Time: 12:14 PM
    Comments:
    Hi, I'm new to the forum. I was diagnosed with Sarcoidosis in 2008-2009. I have not had any problems with it until now. I have noticed my skin in certain spots has been getting lighter in color. I was wondering if anyone else is experiencing this. Also trying to find out of my diet or lifestyle can be a reason why this is happening now. Please email me with any information you may have. Thanks.


    Name: Liz Wise: Lizwise@optonline.net
    From: New Jersey
    Found_SOS_Via: Internet Search
    Date: Wednesday, October 20, 2010 Time: 05:55 AM
    Comments:
    I was diagnosed with sarcoid about a year ago. Took prednisone for 5 months. I am finally feeling close to normal except ever since I was diagnosed I lost my sense of smell. I was wondering if this happened to anyone else. None of my docs tell me if it wil ever come back. Please let me know if anyone has any experience with this. Thanks


    Name: J. Patrick Moore: jpmoore@iglide.net
    From: Oregon
    Found_SOS_Via: Internet Search
    Date: Wednesday, October 20, 2010 Time: 11:25 PM
    Comments:
    Hi all - I was diagnosed with Sarcoidosis in 2004, had red spots on my arm, Dr. tried cortisone cream but no change so he did a biopsy and found the sarcoidosis. His nurse called to advise me of the diagnosis - I had never heard of it and had to have her spell it for me. I looked it up on the internet and the first thing I saw was that there were support groups - and I said to myself, "Oh hell, there's support groups for it!" I shared that with my docter and he got a good laugh out of it and asked if he could share that with other doctors. I had a lung x-ray and then either a CAT scan or MRI - I don't recall which - and it was also in my lungs. My doctor referred me to a great pulmonary specialist who monitored for a while... then I changed jobs, health insurance and doctors. I've never had drugs for it and I'm on more or less a self-monitoring process now. I get winded from slight to moderate exertion but can still mow the lawn and do other types of physical work. Overall, it seems like no real progress of the disease over the last 4 years or so.


    Name: JoAnn Appold: JAppold50@hotmail.com
    From: Maryland
    Found_SOS_Via: Internet Search
    Date: Monday, October 25, 2010 Time: 08:40 PM
    Comments:
    I was diagnosed with sarcoidosis in 2000. Suffered with breathing and lesions on my nose. Went to see my doctor about something else and they sent me to Johns Hopkins. Been on Predisone and a host of drugs since then. Diagnosed with breast cancer in Sept. 2009. My plastic surgeon suggested I see a dermatologist closer to my home than at Hopkins. So I visted Dr. Norman Lockshin. He was very interested in my history and me. I felt like I finally found someone who understood what I was going through. He, like Hopkins suggested Thalidomide. However, when Hopkins tried to get it for me, my insurance company(who I work for) denied paying for the medication. The pharmaceutical company is helping me with the cost. I hope this works. I have lesions around my eyes,on my cheek, around my nose, mouth and chin. My scalp is infected, so I don't have much hair. I suspect there is some in my right ear and the back of neck is showing extreme signs. I also suspect there is some symtoms in my groin area. With all of this, my breathing is much better. My husband says I'm not snoring as much as I use to. I hope the Thalidomide works. By the way, I'm over 50. My husband says our making babies days are over. We just should enjoy the sex. I'm glad I have him for support. He has been great through all of this.

     

     

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