tag:blogger.com,1999:blog-74484055724187503622024-03-14T02:39:58.789-07:00Acromegaly BloggersA blog to for Acromegaly patients and their loved ones to share their experience. Pituitary tumor, growth hormone, IGF-1, endocrinologyUnknownnoreply@blogger.comBlogger159125tag:blogger.com,1999:blog-7448405572418750362.post-28562293644153374842017-08-20T19:00:00.004-07:002017-08-20T19:00:59.100-07:00New Clinical Trial: ORAL ocreotide!<a href="https://clinicaltrials.gov/ct2/show/NCT03252353">https://clinicaltrials.gov/ct2/show/NCT03252353</a><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-69700488130651561462016-12-17T12:01:00.000-08:002016-12-17T12:02:40.356-08:00#LifeWithAcromegaly<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-version="7" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/BNvbCvhDkPi/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">This isn’t about me. It is about an orphan disease which chose me to tell its story. When I was first diagnosed with Acromegaly in 2011, all I needed was information (hopefully in Indian context). I did find a lot of information on the web but none closer home. Now, thanks to this wonderful article by my former colleague and friend @sangeetha.devi published in the #TheHindu today, there will always be an Indian context. So, go ahead, share it with the world. One know never knows – there might be someone looking for that one glimmer home on a bad day with acromegaly or any other rare condition. A big thank you to my family and friends for supporting me in my journey. With you all around, I am not alone in my universe. #LifeWIthAcromegaly #MyStory #HyderabadRunners #fitness @pituitaryorg</a></div>
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A photo posted by Chetan Mallik (@writealign) on <time datetime="2016-12-08T03:24:59+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Dec 7, 2016 at 7:24pm PST</time></div>
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<script async="" defer="" src="//platform.instagram.com/en_US/embeds.js"></script>Bravo, Chetan Mallik!<br />
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There's an article going around in the <a href="https://www.facebook.com/groups/acrocommunity/" target="_blank">Acromegaly Community Facebook Group</a> that really inspires me and echoes so many of the sentiments I've come to realize over the past decade with Acromegaly.<br />
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<a href="http://www.thehindu.com/life-and-style/Life-is-beautiful/article16772189.ece" target="_blank">The article</a> is a profile of a man named Chetan Malik who was diagnosed about 5 years ago by a chance meeting with a doctor who recognized his symptoms. Since then, he chooses to remain positive, upbeat, and active in his life with acromegaly! Bravo, Chetan Mallik! I hope I may have the opportunity to meet him one day!<br />
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Follow Chetan on...<br />
Twitter: <a href="https://twitter.com/writealign">https://twitter.com/writealign</a><br />
Instagram: <a href="https://www.instagram.com/writealign/">https://www.instagram.com/writealign/</a><br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7448405572418750362.post-91763601251464566122016-05-19T15:43:00.000-07:002016-12-09T12:33:21.227-08:00For our Dutch Speaking Friends<iframe width="480" height="270" src="https://www.youtube.com/embed/rcKMtR-IZUo" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-79468360465876209972016-05-04T13:41:00.000-07:002016-05-04T13:42:02.305-07:00Acromegaly Conference and New Blogger!Hello Dearest Acro friends!<br />
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This past weekend was an amazing experience - it was the <a href="http://acromegalycommunity.com/events" target="_blank">Acromegaly Community</a> conference! I have only attended one of these before (in 2011) and this year's conference was every bit as transformational as the first one. There were over 50 acromegaly patients from across the country and globe! Some notable locations I recall: Alaska, Australia, England, and Canada! In addition to the patients, many loved ones and supporters were there, and they even had their own Acromegaly Loved Ones breakout group led by Karen S. (mother of <a href="http://tanyaangus.com/" target="_blank">Tanya Angus</a>) and Tina V. (godmother of Tanya Angus). I am definitely bringing my spouse to the next conference!<br />
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I cannot emphasize enough the benefit of attending an in-person conference like this! I left the conference feeling invigorated, informed, and even more committed to maintaining my health and advocating for better awareness and treatment of acromegaly.<br />
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As I sat in the presentation by Garni Barkhoudarian, MD-Neurosurgery, I remember wondering how my life might have been different had I had access to all the information and knowledge he was sharing before my own surgery. Later during the conference, I had the pleasure of meeting <a href="https://www.blogger.com/profile/10858202304575677584" target="_blank">Bella</a>, a newly diagnosed acro patient who is awaiting her scheduled surgery. Well, lucky for Bella, she was not only getting comprehensive information about pituitary surgery before her operation, she is going into surgery knowing that she is not alone and there is a whole family of acromegaly patients supporting her! I'm so happy that I had a chance to sit and talk with Bella during and after the conference. She has an amazing upbeat attitude, and I just learned via the Acromegaly Facebook Group that she is blogging her acromegaly journey! Check it out! She already has several posts up even though she just started it this month!<br />
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<b><a href="http://bellasbeanstalk.blogspot.com/">http://bellasbeanstalk.blogspot.com/</a></b></div>
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Reading her journey reminds me of my own experience with diagnosis and surgery, now over 10 years ago! I remember how writing on a blog not only helped my loved ones understand what I was going through, but it also helped me sort out my inner thoughts and feelings. Make sure to go over to Bella's blog, read her story, and leave her supportive comments! </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-44513756821641503562016-04-12T08:17:00.000-07:002016-04-12T08:17:02.401-07:00Acromegaly makes NYTimes THINK LIKE A DOCTOR column<div class="separator" style="clear: both; text-align: center;">
<a href="http://well.blogs.nytimes.com/2016/04/07/think-like-a-doctor-packing-on-the-pounds/" target="_blank"><img border="0" src="http://graphics8.nytimes.com/images/2016/04/07/health/tlad1/tlad1-tmagArticle.jpg" height="295" width="320" /></a><span id="goog_1671252153"></span><span id="goog_1671252154"></span><a href="https://www.blogger.com/"></a></div>
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Finally! One of the reasons I write this blog is because I want to raise awareness of acromegaly within the general public. One of me dreams was to have acromegaly featured as one of the mystery diagnoses on the TV show <i>House. </i>There is a monthly column in the NY Times called <i>Think Like a Doctor </i>that is a real life version of the fictional plot of <i>House</i>- a patient presents mysterious symptoms that are difficult to diagnose, and after lots of trial and error, the cause of the patient's symptoms are finally uncovered.<br />
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Well guess what! Last week acromegaly finally made it! Here's the <a href="http://well.blogs.nytimes.com/2016/04/07/think-like-a-doctor-packing-on-the-pounds/" target="_blank">presentation of the mystery</a> and the (spoiler alert, a little late I guess) long and winding process to <a href="http://well.blogs.nytimes.com/2016/04/08/think-like-a-doctor-packing-on-the-pounds-solved" target="_blank">diagnosis of acromegaly</a>.<br />
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The diagnosis article asks, "How do we miss this disease?" I'll tell you: fat shaming. I attend an in-person acromegaly support group, and one thing I've heard from multiple acromegaly (and Cushings!) patients is that their diagnosis was <i>delayed by years</i> because their doctors saw that they were overweight, and then dismissed all their symptoms as a result of being overweight. "Go loose weight. You're fine." Weight already comes with so much judgement and assumptions in our society (people are "fat" because they are lazy, greedy, no self control, etc etc.), and here the overweight patient is blamed when really there is a dangerous underlying medical condition that needs to be addressed.<br />
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I hope that this article will help people realize that there are medical reasons for weight gain, and we should be more compassionate towards those who are overweight (including ourselves if that's the case!) because you never know what is going on with a person.<br />
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<i>Thanks Carolyn from <a href="http://acromegaly.care/">acromegaly.care</a> for pointing the article out to me!</i>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-16205800365095028342014-09-30T07:02:00.000-07:002014-09-30T07:02:13.067-07:00"I had a bubble on my brain"<div class="separator" style="clear: both; text-align: center;">
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I was walking around yesterday and saw <a href="http://nyp.org/kids/kids/where-i-got-better.html" target="_blank">an ad</a> in a bus stop that said, "I had a bubble on my brain and they took it out through my nose. Now I can go back to school."<br />
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I've been there! (Taking out "the bubble" through my nose part, at least. I was out of school by then.) So it turns out little Nile's tumor was not quite a pituitary tumor, but the surgery was the same. Can you imagine how tiny and delicate the passageway for the operation must have been.<br />
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I sent a photo of the bus stop ad to someone I had met just the day before- I was at my friend's niece's birthday party, and my friend's sister was like, "Hey you and this guy should talk, I think you had the same thing, your pituitary operation?" Turns out he had a pituitary tumor removed just three weeks ago, and wanted to know what the rest of his recovery would be like. The doctors don't think his tumor was actively secreting any hormones (more test results pending), so he doesn't have acromegaly but we still had that kindred experience of getting diagnosed, facing surgery, surgery, and recovery. It was strange to recall a time that was almost a whole decade ago! I was such a different person, so much has happened since then, and I hadn't even talked about my experience in detail in a while. It was great to hear the similarities in our stories (for example we were both diagnosed because of vision symptoms, peripheral vision loss) and it also felt good to represent long-term recovery to him - like, "Yes, you will have a (semi) normal life again! I am proof!" He's my new "Brain Bubble Buddy!"<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-30213347910757216462014-09-29T09:07:00.006-07:002014-09-29T09:07:51.834-07:00Pre-surgery: So Calm!<div id="fb-root">
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<a href="https://www.facebook.com/video.php?v=10152309044520812">Post</a> by <a href="https://www.facebook.com/brian.t.smith">Brian Temple Smith</a>.</div>
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I'm super impressed by how this guy manages to be so casual about his diagnosis and scheduled surgery, and I love the way he is spreading awareness of the disease among his friends!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7448405572418750362.post-62689773058145727872014-04-14T09:20:00.002-07:002014-04-14T09:20:32.582-07:00New Blogger: Dicky Moo!<i>This post has been saved as draft for way too long, I was meaning to post this in June of last year! </i><br />
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Richard had <a href="http://www.dickymoo.com/2012/11/two-days-post-operation/" target="_blank">pituitary surgery in November of 2012</a>, and you can read all about it at <a href="http://dickymoo.com/">dickymoo.com</a>!<br />
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If you know of other acromegaly blogs out there, please leave a note in the comments so we can collect them all!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-90468672452987433072014-03-24T13:28:00.003-07:002016-12-09T12:39:24.733-08:00FEELING PRETTY<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/MhFYWnjRePo" width="480"></iframe>
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OMG I've been DREAMING of this for so long, and now it actually exists! I've always admired Kevyn Aucoin's philosophy, life, and work, and I knew about <a href="http://nymag.com/nymetro/urban/gay/features/6236/" target="_blank">his struggle with acromegaly</a>. Now his company is partnering with Novartis to help women with Acromegaly (and Cushings) to feel better about their appearance, which I know first hand is a big part of dealing with this disease.<br />
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"INTRODUCING… THE HIGHLIGHTS PROJECT ACROMEGALY MAKEUP TUTORIAL!<br />
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The Highlights Project provides tools to those living with Cushing’s disease and acromegaly to help them redefine beauty and change their perspective about the way they look. <br />
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Those living with acromegaly often experience physical symptoms that change their outward appearance. Some of the most common symptoms include: enlarged facial features like the forehead and jaw, enlarged hands and feet, coarse skin and excessive sweating. These symptoms can make those with the condition self-conscious. However, there are several ways you can use the art of makeup to help you take back control of your appearance and feel beautiful! Watch this video to see how Shannon, an acromegaly patient, learns to use some everyday makeup tips to boost her confidence! Afterwards, try these tips out yourself and you will be well on your way to looking and feeling your best!"<br />
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<a href="http://highlightsproject.com/">http://highlightsproject.com/</a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7448405572418750362.post-64312902892421377102013-12-02T10:20:00.001-08:002013-12-02T10:20:17.429-08:00Dr. David L. Kleinberg: What's New?<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/Kni6sSWHxCE" width="420"></iframe><br />
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This video was posed almost a year ago, but it's nice to check in from time to time and hear what new knowledge and research has emerged since I did my just-got-diagnosed-internet-search about everything acromegaly<br />
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via <a href="https://www.facebook.com/jill.ellissisco" target="_blank">Jill Sisco</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-3986021011336264242013-11-25T09:19:00.001-08:002013-11-27T12:07:54.277-08:00"It’s time we changed the system."<div class="tr_bq">
Mary Lou Jepsen is a Silicon Valley entrepreneur and scientist, and she wrote an incredibly personal piece for the New York Times about her struggles with a pituitary tumor and its aftermath titled, "<a href="http://www.nytimes.com/2013/11/24/opinion/sunday/bringing-back-my-real-self-with-hormones.html?pagewanted=print" target="_blank">Bringing Back My Real Self With Hormones</a>." I love the title because that's what we're all struggling to do, isn't it? I personally am searching for the person that I used to be, before the tumor started growing, before the hormones took a toll on my body. </div>
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Mary Lou Jepsen's story is fascinating and definitely work the read! She describes so many unfortunately familiar experiences to that of an acromegaly patient.<br />
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The New York Times<br />
November 23, 2013<br />
Bringing Back My Real Self With Hormones<br />
By MARY LOU JEPSEN</blockquote>
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IN my early 30s, for a few months, I altered my body chemistry and hormones so that I was closer to a man in his early 20s. I was blown away by how dramatically my thoughts changed. I was angry almost all the time, thought about sex constantly, and assumed I was the smartest person in the entire world. Over the years I had met guys rather like this.<br />
I was not experimenting with hormone levels out of idle curiosity or in some kind of quirky science experiment. I was on hormone treatments because I’d had a tumor removed along with part of my pituitary gland, which makes key hormones the body needs to function.</blockquote>
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This long journey may have started as early as 1978, when I was 13. I spent a summer in intensive care with an unknown disease. After that summer, I never thought I would live a long life. So I wanted to live, to do interesting, fascinating work in the limited time I thought I had left. I took on the math-intensive art form of holography, and in my early 20s traveled the world, living on university fellowships to pursue this esoteric craft. I didn’t date much, really — perhaps because I didn’t have many hormones, though I didn’t know that at the time. I worked as an artist, played in a band, met Andy Warhol, Christo, Lou Reed and David Byrne. I had fun. But the gravity of my illness grew in the 1990s.</blockquote>
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The growth that shut down my pituitary gland’s ability to produce hormones did so insidiously over many years. By my early 20s it was, I suspect in retrospect, causing misdiagnosis of symptoms that were most likely caused by lack of hormones like cortisol. No diagnosis was found, despite the efforts of many doctors. I was a doctoral student in electrical engineering at an Ivy League school, but was growing progressively worse. I routinely slept about 20 hours a day, lived with a constant blistering headache and frequent vomiting, and was periodically wheelchair-bound. Large sections of my skin cycled through a rainbow of colors and sores, half of my face wouldn’t move as if Novocain had been applied. I drooled. Worse: I felt stupid. I couldn’t subtract anymore. I couldn’t make a to-do list, let alone accomplish items on one. I recognized that I wasn’t capable of continuing in graduate school. Utterly defeated, I filled out the paperwork to drop out.</blockquote>
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Then, in the summer of 1995, my brain tumor was discovered. Diagnosis can often take this long. This might be because of the insidious and chameleonlike nature of this disease. The tumor was not malignant, but it had disrupted my pituitary function. The symptoms are general, confusing, escalate slowly over years and can be easily misinterpreted.<br />
It was great to have a chance at a meaningful life again, but I found it embarrassing to learn firsthand how completely controlled we are by our hormones. I thought it was about the gray matter, but this experience forced me to look differently at how we think. I have had to shape my personality by my hormone doses.<br />
The journey of tuning “me” began by fixing basic things. Everyone focuses on testosterone and estrogen, but these are just a small part of the mix of what is needed to stay alive and healthy. For example, consider the hormone cortisol; it’s a crucial component of the immune system, and you can’t live without it. I don’t make any cortisol. If I don’t take it, I could die.</blockquote>
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I had to make a plan to replace the chemicals that the missing parts of my brain used to make. There wasn’t a clear and detailed road map for this. Blood levels of these chemicals vary for people of the same age and sex, and even more between men and women, young and old. More of us may be affected by variant hormone levels than we realize. One systematic review estimated the prevalence of pituitary tumors at nearly 17 percent of the general population.<br />
So, what was the dose for each chemical that made “me” me? And how was I to find out without trying a range?<br />
I started trying different dosages and was amazed by how my thinking, my sense of who I was and my behavior toward others changed with tiny shifts in dosages. I didn’t know who I was anymore, nor who I wanted to be, but I was healthier.</blockquote>
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I finished my Ph.D. within months of my surgery to remove the tumor and co-founded my first technology start-up. Yet it took me years to craft a better “me” after my personality was essentially killed by the effects of the tumor and surgery.<br />
This sort of exploration and self-tuning is not easy. Finding a doctor who could help me replace all the chemicals that the missing parts of my brain had made in age- and sex-appropriate combinations was nearly impossible. Doctors told me it would be too expensive, that I was fine and didn’t need to do more.</blockquote>
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They were wrong. I gained nearly 60 pounds within a year of surgery on the dosages I was prescribed. I fell down two stairs during this time and broke both ankles, since my bones had been weakened by the absence of hormones. For the next six months I lived in a wheelchair at my start-up because I couldn’t get back up the stairs to my apartment in San Francisco or drive without use of my legs in the stick-shift car I owned. We didn’t have a shower there, so I had to take sponge baths and sleep on a futon in my office. I was not “fine.”</blockquote>
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This all changed when I finally found a doctor to work with me to reconstruct my personality and my health by tuning combinations and doses of these powerful chemicals; this physician’s support and patience over 18 months helped bring “me” back to life. I lost about 80 pounds in a year without a program of diet or exercise. I stopped suffering from terrible jet lag during my frequent travels. I felt clever again, and my career began to take off. I started to date.</blockquote>
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In my experience it can be difficult to find a doctor to help a patient do this. I believe it is only partly because of the shortage of endocrinologists, doctors who specialize in the hormonal systems. Some doctors seemed not to believe that every hormone mattered. How many other patients like me have failed to find their ideal balance of medications?<br />
There is evidence that careful tuning of these hormones can lead to dramatic personal and professional outcomes. Doctors and patients should consider replacement of every known hormone that is missing. New neurochemicals are identified by researchers every few years and should be studied as possible additions to the mix.</blockquote>
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And access to these medications should not be hindered. As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor’s office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.</blockquote>
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Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.</blockquote>
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I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.</blockquote>
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Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.</blockquote>
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A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won’t go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?</blockquote>
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Solutions should focus on allowing patients with a proper diagnosis continuing access to the medications they need. The health care system should make it easier for patients who need vital hormones or medications to actually get them every time. And new technologies should be used to make it easier to get our prescriptions filled and to understand why they are held up. In the past, pharmacies and insurance representatives have denied me access to such information in a timely manner, such as email or even over the phone. Access to online systems would allow patients to track their prescription from the doctor’s office to the pharmacy, and to get information about insurance coverage.</blockquote>
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Without the ability to fine-tune my hormones and neurochemicals I believe I would have been trapped as a near-imbecile, wheelchair-bound, in my mother’s basement for an abbreviated and miserable adult life.</blockquote>
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But with this ability I have reached the top of my field. Still, the health care system hinders my access to the chemicals I need to live. I am far from alone in this situation. It’s time we changed the system.</blockquote>
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<i><br /></i><i>Mary Lou Jepsen is a Silicon Valley entrepreneur and scientist.</i></blockquote>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7448405572418750362.post-80937909769381839822013-11-11T21:14:00.000-08:002013-11-11T21:14:18.881-08:00Contact Update for Missing Bloggers?<div dir="ltr" style="text-align: left;" trbidi="on">
Just cleaning house a bit. I removed some bloggers whose blogs were broken links and I have no contact information for them. If anyone has information to update let me know and I'll add them back. I hope life is well for those bloggers and that's the reason they stopped blogging :-)
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Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-24624308609993161562013-05-31T16:37:00.002-07:002013-05-31T16:42:17.999-07:00Acromegaly Paid StudyI just received this email if anyone is interested:
<br><br>
My name is Amanda Chen and I am a Health Researcher
at Self Care Catalysts Inc. We are a patient-centred research and
solutions company, focusing on engaging patients to share their
journeys.
<br><br>
Currently we are conducting a study on patients
diagnosed with Acromegaly. This confidential study will involve a 60
minute telephone interview and the completion of 5 days of short-answer
journal writing (approximately 10 minutes per day).
<br><br>
This is a compensated study. Attached is a copy of the poster about
this research.
<br><br>
For any information you would like to know, or if
you or anyone you know might be interested in participating, please do
not hesitate to contact me anytime.
<br><br>
Below is an eligibility pre-interview survey for your reference:
<a href="http://self-care-catalysts.acromegaly-study.sgizmo.com/s3/" target="_blank">http://self-care-catalysts.<wbr></wbr>Acromegaly-Study.sgizmo.com/<wbr></wbr>s3/</a>
<br><br>
Amanda Chen | Research & Analytics Associate<br>
Self Care Catalysts Inc.<br>
MaRS Centre, South Tower Ste 300<br>
101 College St. Toronto, ON M5G 1L7<br>
T <a href="tel:416-673-6676" target="_blank" value="+14166736676">416-673-6676</a> | C <a href="tel:416-821-8435" target="_blank" value="+14168218435">416-821-8435</a></span><span lang="EN-US"><br>
<a href="http://www.selfcarecatalysts.com/" target="_blank">www.selfcarecatalysts.com
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com2tag:blogger.com,1999:blog-7448405572418750362.post-61610044391625936972013-05-29T23:47:00.000-07:002013-05-29T23:47:12.378-07:00LAR Injections & Scar Tissue<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: rgba(255, 255, 255, 0);">I'm wondering if anyone has a problem with scar tissue inhibiting injection of Sandostatin LAR? I'm on 40mg every 3 weeks. I've been getting LAR injections for almost 7 years. In about the last year my doctor has been having problems injecting, and a significant amount of medication is spilled. At first I thought he wasn't thawing medication properly. But it's happening almost every month now. I also have hard lumps as though medication collects in one spot and doesn't distribute. I haven't tried massage extensively, but its very painful and doesn't seem to reduce lumps. My symptoms are trying to return and my IGF-1 is slowly increasing as I'm not receiving the optimal dose. Anyone with experience or suggestions?? I'm hoping I don't have to go the daily injection route. I imagine I'd eventually build scar tissue that way too. Thanks!</span></div>
Starbucks Addicthttp://www.blogger.com/profile/00713635628716309428noreply@blogger.com3tag:blogger.com,1999:blog-7448405572418750362.post-8841786603339985802013-03-23T19:46:00.000-07:002013-03-23T19:59:30.368-07:00Tanya Angus<i>This post is long overdue, because writing it has stirred up many emotions for me. Publishing it makes it feel real and final and undeniable.</i><br />
<br />
<b><a href="http://tanyaangus.com/" target="_blank">Tanya Angus</a> passed away on January 14, 2013.</b><br />
<br />
Tanya was an inspiration to me any many others across the acromegaly community. By being an acromegaly awareness activist, she saved lives and spared others from the suffering that comes with a delayed diagnosis. She went public with her struggles, which helped her fellow acromegaly patients remember we are not alone and that someone out there understands. By sharing her story, she taught people to be compassionate and non-judgmental towards others, because she opened up about all the things she has to deal with behind the scenes, and this could happen to anyone. Throughout her life, Tanya was a role model of grace, kindness, humor, dignity, and <i>purpose</i> in the face of adversity.<br />
<br />
I followed Tanya's acromegaly journey online via <a href="http://tanyaangus.com/" target="_blank">her website</a>, where I read updates and watched her <a href="http://acromegalybloggers.blogspot.com/2012/10/tanya-on-dr-oz.html" target="_blank">appearances on TV shows</a> and <a href="http://www.youtube.com/user/ktnv/videos?query=%22tanya+angus%22+acromegaly" target="_blank">local news features</a>. Many of the news articles that reported on her death noted her age: just 34 years old. Seeing <a href="https://www.google.com/search?q=tanya+angus+34&oq=tanya+angus+34">all those headlines</a> was a glaring reminder of how young she was and that acromegaly took her away from us too soon.<br />
<br />
I had the honor of <a href="http://acromegalybloggers.blogspot.com/2010/10/acromegaly-gals.html" target="_blank">spending time with her in person</a> twice in addition to a few brief phone calls. I dreamt of the day when we could have a big celebration together because a cure had been discovered- some procedure or drug that would work for all of us, permanently, and we would be free from the the pain, medication, side effects, medical appointments, tests, and emotional exhaustion that comes with the disease. Tanya is free of all of those things now, and remembering that is my only comfort as I consider her passing.<br />
<br />
My heart goes out to her loving family, especially her mother Karen and godmother Tina. By taking care of Tanya, Karen and Tina also took care of the entire acromegaly community by extension, because Tanya's story raised awareness of our disease, got people to care, and helped them to understand what we go through. If there ever is a cure, it will be a result of Tanya, Karen, and Tina's efforts.<br />
<br />
Rest in peace, Tanya. You are missed and will never be forgotten. You continue to inspire me even though you are no longer with us, and I hope that I can honor you by continuing your mission to educate others about this disease.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7448405572418750362.post-13327909246995091972012-10-06T07:37:00.002-07:002012-10-06T07:37:37.892-07:00Aubrey Understands<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-tN7W3kVVNh8/UHA7MvwRzEI/AAAAAAAADz0/-vwV1YIC5pg/s1600/aubrey.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="386" src="http://3.bp.blogspot.com/-tN7W3kVVNh8/UHA7MvwRzEI/AAAAAAAADz0/-vwV1YIC5pg/s400/aubrey.jpg" width="400" /></a></div>
I was reading <a href="http://www.bust.com/blog/aubrey-plaza-uncensored.html" target="_blank">a magazine interview with Aubrey Plaza</a> (a young Hollywood actress) the other day, when I was stunned to find a quote from her that expressed exactly how I've been feeling ever since my acromegaly diagnosis. Aubrey had a stroke at age 20, and she's been dealing with underlying anxiety ever since:<br />
<blockquote class="tr_bq">
<b>"The most frustrating thing about it was I don't why it happened, and there's where a lot of my anxiety came from. Once you know why something happened to you, you can rationalize it like, 'If I do this, I won't get sick' but if you don't know exactly why, at all times you're thinking, <i>At any moment I could die</i>, because when it did happen, it was totally out of nowhere. That's the scariest part." </b></blockquote>
There are so few people that truly understand what being diagnosed with acromegaly (or surviving a stroke at age 20) is like. I constantly wonder what might have triggered my tumor, like if there was some kind of chemical or environmental exposure. Everywhere I go, I observe potential threats to my health, which leaves me feeling vulnerable and constantly on the defensive. Sometimes people think I'm just being quirky and they'll laugh and think it's cute, and sometimes people just think I'm being a paranoid pain-in-the a**. Either way, it's a real problem for me because I get really stressed out and then I start worrying that <i>stress</i> is what caused my tumor- and then I really start spiraling from there. I'll get really irrational, like start wondering if having acromegaly is some kind of punishment for other mistakes I've made in my life.<br />
<br />
I've been doing on <a href="http://en.wikipedia.org/wiki/Mindfulness-based_stress_reduction" target="_blank">Mindfulness Based Stress Reduction</a> (MBSR), a little yoga here and there (That's what Aubrey says she does to help deal!), trying to walk and exercise more, eat well, sleep well, get massages, spend time with my dog, etc etc, and all of that has really helped me deal with the anxiety. Writing (like on this blog) has helped me too. Having a community has also been really important (see links to support groups on the sidebar to the right) too. So I have a question for you all: what are YOU doing to manage stress and anxiety?Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7448405572418750362.post-61848458331222470322012-10-03T15:11:00.000-07:002012-10-03T15:11:34.554-07:00Tanya on Dr. Oz<a href="http://tanyaangus.com/">Tanya</a> continues to raise awareness about acromegaly!
<br><br>
<iframe width="480" height="270" src="http://www.youtube.com/embed/QaqB5fIKOhI?rel=0" frameborder="0" allowfullscreen></iframe>
<br><br>
I had never seen the show before, so I was quite impressed by how compassionate Dr. Oz was. He apologized on behalf of all doctors for not paying attention to their patients, and being arrogant when they don't understand what is going on with their patients. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7448405572418750362.post-57137223061036340332012-08-22T20:44:00.000-07:002012-09-03T19:09:01.916-07:00I just met you, and this is crazy...<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-Q_rsxwsWxHM/UDWmo3W7NqI/AAAAAAAADyU/2PpB0sCZGnA/s1600/CarlyRaeJepsen.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://3.bp.blogspot.com/-Q_rsxwsWxHM/UDWmo3W7NqI/AAAAAAAADyU/2PpB0sCZGnA/s320/CarlyRaeJepsen.jpeg" width="320" /></a></div>
<div>
I was riding the bus today (coming home from the rheumatologist, in hopes of finding some joint pain relief) when a gentleman boarded that I thought looked like he definitely had acromegaly. I was so excited when I saw him, because how often do you meet someone else with acromegaly in real life? I imagined becoming friends with him and starting a local support group. We could compare notes about our doctors, talk about what kind of treatment options we are pursuing, etc, etc. Basically all the things that people are doing in support groups online, but in person!</div>
<div>
<br /></div>
<div>
I didn't want to make him feel self conscious though, because I can understand how someone out of the blue talking about a very personal health issue could be disconcerting. I remembered that I happened to have one of my <a href="http://acromegalybloggers.blogspot.com/2010/05/business-cards.html" target="_blank">acromegaly business cards</a> on me, so I wrote my email address on the back, along with "I have acromegaly too!" on it (and also the URL for this blog). I was very nervous about approaching him, because sometimes it's weird to reach out to a stranger like that.</div>
<div>
<br /></div>
<div>
I worked up the nerve to say hello to him, and I said something like, "<a href="http://www.youtube.com/watch?v=fWNaR-rxAic&feature=share&list=ALHTd1VmZQRNr4TtpzDOt5cpTNERAgncEx" target="_blank">I just met you, and this is crazy</a>, I have acromegaly too, so email me maybe." Well, not quite, but something like that. Anyway, he said that he had never heard of acromegaly which really surprised me because I was sure that he had been diagnosed already. He was reluctant to take my card, but I awkwardly stood there holding it out until he finally took it. </div>
<div>
<br /></div>
<div>
Anyway, person I met today on the bus, if you are reading this: I'm sorry if I made you feel uncomfortable. I hope you realize that my intentions were good and here was my rationale:</div>
<div>
<ul>
<li>I have often felt so alone dealing with acromegaly that I thought both of us would benefit from having someone to have someone to talk to about it locally. </li>
<li>If you really don't know what acromegaly is, maybe you can look into it and our encounter today will lead to improvements in your quality of life. Most people (myself included) go undiagnosed for years and years, but the earlier you are diagnosed and start treatment the better the outcome. I personally wish I had been diagnosed earlier. </li>
<li>If you know you have acromegaly and you just didn't want to admit it because it's something very personal to talk to about it I respect that. Sorry if I made you feel self conscious about it.</li>
<li>If you have already been checked for acromegaly and you don't have it, please don't take offense, I hope you'll understand that I was just trying to help. </li>
</ul>
</div>
<div>
So I have a question for all of you readers out there - do you ever look at other people and recognize acromegaly in the general population? Do you ever feel tempted to say something, or has anyone ever said something to you? Do you think it is worth potentially offending someone if on the other hand it could lead to an earlier diagnosis? What is a tactful way to approach the topic, or is there even one? Leave a comment below with your thoughts!</div>
Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-7448405572418750362.post-15891195137164892782012-08-16T09:16:00.001-07:002012-08-16T09:16:08.384-07:00Great Discussion on PituitaryAdemoaner<a href="http://www.blogger.com/profile/06156427719511575959" target="_blank">Emer</a> of <a href="http://pituitaryademoaner.blogspot.com/">pituitaryademoaner.blogspot.com</a> wrote a very thoughtful post about the recent lawsuit by a woman who went untreated for acromegaly for several years because of lack of diagnosis by the NHS. There are several very thoughtful comments in response to her article as well - you should check it out!<br />
<br />
<a href="http://pituitaryademoaner.blogspot.com/2012/08/girl-with-acromegaly-sues-nhs.html">http://pituitaryademoaner.blogspot.com/2012/08/girl-with-acromegaly-sues-nhs.html</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-54399498083582657412012-04-18T11:00:00.002-07:002012-04-18T11:03:56.043-07:00Welcome Mike!<a href="http://mikelenze.com/wordpress/wp-content/uploads/2012/03/80_512475612858_25708857_31472675_5354_n1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://mikelenze.com/wordpress/wp-content/uploads/2012/03/80_512475612858_25708857_31472675_5354_n1.jpg" width="216" /></a>We have yet another acromegaly blogger added to the fold! <br />
<br />
<a href="http://mikelenze.com/?page_id=2" target="_blank">Mike</a> writes, "Hello! I’m Michael, a 27 year old of the Mitten state. I’m a second year osteopathic medical student aspiring to be an ophthalmologist. I have a strong affinity for music and lemon poppy seed muffins. I was <a href="http://mikelenze.com/?page_id=53" target="_blank">diagnosed with a brain tumor last December</a>. This is my story. I enjoy reading, the human body, exchanging snail mail, and meeting new people."<br />
<br />
Sounds perfect for this community, right? Check out <a href="http://mikelenze.com/" target="_blank">Mike's blog</a>, http://mikelenze.com, and drop him a note! I just checked his blog again today, and he uploaded some <a href="http://mikelenze.com/?p=202" target="_blank">surgery pictures</a>- WOW!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7448405572418750362.post-35419038849730491332012-04-17T15:07:00.001-07:002012-04-18T08:47:33.551-07:00Spring is Here<div class="separator" style="clear: both; text-align: center;"><a href="http://toomas-marit.hinnosaar.net/en/places/Soome2004/helsinki2004/Spring.html" target="_blank"><img border="0" height="240" src="http://1.bp.blogspot.com/-1nkDfYblA5k/T43nMOJgOeI/AAAAAAAADg4/TWz-amaQ1bc/s320/spring.jpg" width="320" /></a></div><br />
...for those of us in the Northern Hemisphere, at least (I know we are sprinkled around the globe)!<br />
<br />
As the weather is warming up, I am experiencing different symptoms compared to during the winter. Are any of the rest of you noticing this as well?<br />
<br />
<b>Benefits that Spring brings</b>:<br />
<ul><li>Sunshine: energizing and helps counteract depression</li>
<li>Warm Weather: likely to go outside and get exercise, fresh air, etc)</li>
<li>Fresh Seasonal Fruits and Vegetables: make it easier to eat healthy and achieve/maintain a healthy weight</li>
<li>Longer Days: easier to wake up the mornings and more daylight hours to enjoy fun activities</li>
<li>Flip Flops: shoes for folks with wide feet (like me) that don't squeeze!</li>
</ul><b>Concerns that Spring brings</b>:<br />
<ul><li>Heat = more sweating! Solution: wear comfortable, breathable clothing.</li>
<li>Exposed skin = excess body hair is also exposed! Solution: hair removal, or decide to just go with it!</li>
<li>Heat = swelling in hands and feet more. Solution: cold compresses on hands and feet, and elevate legs in the evening.</li>
<li>Heat = skin oils increase. Solution: (face) blot with tissues and wash frequently, (body/hair) shower more frequently</li>
</ul>Let me know in the comments section how the changing seasons affect your acromegaly, and what solutions you have come up with to help deal!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-1314426158776529262012-02-15T11:39:00.000-08:002012-02-15T11:39:12.764-08:00Welcome, Lauren Nicole!Please join me in welcoming a new Acromegaly Blogger to the fold!<br />
<br />
<a href="http://www.blogger.com/profile/09259646330294881487">Lauren Nicole</a> just started a new blog called <a href="http://acromegalypudding.blogspot.com/" target="_blank">The Life and Times of Lauren Nicole</a> (love the URL: http://<i>acromegalypudding</i>.blogspot.com/). Lauren had transsephenoidal surgery for a macroadenoma on her pituitary gland <a href="http://acromegalypudding.blogspot.com/2012/02/its-amazing-what-time-can-do.html">August 12, 2011</a>, it sounds like it was a life changing event for her. I'm really excited about hearing more about her acromegaly experience and journey!<br />
<br />
Nicole, I hope you find that writing about your experience with acromegaly is therapeutic and insightful for you. As time goes on, you'll be able to look back and see how far you've come, and how much you've changed inside and out!<br />
<br />
In turn, I hope that someone who is looking for inspiration, support, or understanding will find your blog and feel better about their own acromegaly. Keep writing!Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7448405572418750362.post-22898572798197373222012-02-13T13:19:00.000-08:002012-02-13T13:19:57.493-08:00Japan team create pituitary glands from mouse cellsThis was <a href="http://acromegalybloggers.blogspot.com/2011/11/pituitary-glands-grown-from-mouse.html">mentioned</a> a while ago, but now with video.<br />
<br />
Thanks for the link, <a href="http://www.jondanzig.com/" target="_blank">Jon</a>!<br />
<br />
<iframe width="560" height="315" src="http://www.youtube.com/embed/wFLNwyQdYj0" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7448405572418750362.post-22328075349621898602012-02-10T18:40:00.000-08:002012-02-10T18:48:18.992-08:00Pituitary Patient Awareness Day (Los Angeles)Hi Everyone!<br />
<br />
Cedars Sinai Pituitary Center is having a Pituitary Patient Awareness Day NEXT WEEK in the Los Angeles Area. <br />
<br />
<div style="text-align: center;"><b>Pituitary Patient Awareness Day</b></div><div style="text-align: center;"><b>Sunday February 19, 2012</b></div><br />
<div style="text-align: center;">Hotel Casa del Mar</div><div style="text-align: center;">1910 Ocean Way</div><div style="text-align: center;">Santa Monica, CA 90405</div><div style="text-align: center;">(310) 581-5533</div><div style="text-align: center;">hotelcasadelmar.com</div><div style="text-align: center;"><i>complimentary valet parking will be provided</i></div><b>Details:</b><br />
<br />
9-10 AM Registration<br />
<br />
10-1 PM Physician Lectures :<br />
<br />
<div style="text-align: center;">"Pituitary Anatomy and Physiology" Shlomo Melmed, MD</div><div style="text-align: center;">"<b>Acromegaly</b>" Vivien Bonert, MD</div><div style="text-align: center;">"Prolactinoma" Joh Carmichael, MD</div><div style="text-align: center;">"Pituitary Surgery" Adam Mamelak, MD</div><div style="text-align: center;">"Cushing's Disease" Anat BenShlomo, MD</div><div style="text-align: center;">"Pschosocial Changes of Dealing with a Pituitary Disorder" Catherine Jonas, LMFT, BCETS </div><br />
1-2 PM Lunch<br />
<br />
2-3 PM Break-out Sessions<br />
<br />
<b>RSVP: </b>310-423-2617 or email kirsten[DOT]lapid[AT]cshs.org<br />
<br />
<br />
<br />
<i>Also coming up:</i><br />
<br />
<div style="text-align: center;"><a href="http://acromegalycommunity.com/resources?task=view_event&event_id=18" target="_blank"><b>It's About the Community! 2012</b></a></div><div style="text-align: center;"><a href="http://www.facebook.com/acromegaly" target="_blank">Acromegaly Community</a>’s 2012 Conference</div><div class="eb_description" style="background-color: white; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 5px; padding-top: 0px; text-align: left;"><h3 style="margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 15px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="font-family: Arial, Helvetica, sans-serif; font-weight: normal; line-height: 18px;"><span style="font-size: small;"><div style="text-align: center;">June 8-10, 2012 in Las Vegas, NV at the Red Rock Casino, Resort, and Spa.</div><div style="text-align: center;"><i>See <a href="http://acromegalycommunity.com/resources?task=view_event&event_id=18" target="_blank">website</a> for more details</i></div></span></span></h3></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7448405572418750362.post-73426033751378907242011-11-17T23:02:00.000-08:002011-11-17T23:02:15.741-08:00New Bloggers!Hello dearest readers! <br />
<br />
I just wanted to take a moment to draw your attention to two new bloggers that have been added to the sidebar to the right ---------><br />
<blockquote class="tr_bq"><b><a href="http://www.blogger.com/profile/13838467371170916900" target="_blank">Brotha</a></b> writes about <a href="http://acromegallic.blogspot.com/" target="_blank">Living with Acromegaly</a> at acromegallic.blogspot.com. "<span>I'm trying to find a way to turn this into something positive, so I decided to write about it and share my day, feelings, fears, joys, and whatever else I may think of with you. And in turn my this will be therapeutic for me and entertaining to you." Brotha is so inspiring!</span><br />
<br />
<span><b><a href="http://www.blogger.com/profile/06156427719511575959" target="_blank">Emer</a></b> was diagnosed with a p</span>ituitary adenoma secreting thyroid-stimulating hormone less than a year ago, and she writes about all kinds of pituitary tumors in her incredibly humorous blog <a href="http://pituitaryademoaner.blogspot.com/" target="_blank">Pituitary Ademoaner</a> (pituitaryademoaner.blogspot.com). In her recent post profiling <a href="http://pituitaryademoaner.blogspot.com/2011/11/russell-watson-its-not-all-about-you.html" target="_blank">famous people with pituitary tumors</a>, she writes, <span>"</span>Acromegalicious folk are obviously awesome," and I think she's awesome too!</blockquote>Check out both blogs when you have the chance, and make sure to introduce yourself or say hello to them in the comments!<br />
<br />
If there's anyone else out there that wants to be added to the roster, just leave a comment on this blog with a link to yourself!Unknownnoreply@blogger.com2