Growth Hormone article in For Men Fitness RX

There's a really good article on GH in the November 2007 edition of For Men Fitness RX. The article's goal is to INCREASE GH but... in the process of telling how to do that it also tells what DECREASES GH and that's the good stuff for us. Seems that a heavy "no rest" workout will increase GH by a huge 11X factor whereas a workout that rests a lot and lifts heavy weights slowly (to build strength rather than bulky muscle) only results in a 3X spike in GH. It also has some great things on sleep and various foods. Knowing the information in this article is helping me because now I know WHY my GH levels have been so strange lately (I work lots of freight at The Home Depot and I just got moved to the paint department - HEAVY stuff). I was aware of a lot of diet knowledge but not so much about muscles, exercise, and GH spikes. So now I know. Highly recommended article if you can see the opposite side of what the author is saying.

Acromegaly Signs and Symptoms

Before:

After:

Better?

Sorry I have been posting SO MUCH lately, I guess I have too much time on my hands... I like to think of my body transforming into a Sea Monkey body because my hands and feet are so well suited for swimming now.

Is this the new medication you guys were talking about?

"Somatuline® Depot (lanreotide) Injection is now FDA-approved and will be available in pharmacies the week of October 15th."

"(also marketed as Somatuline® Autogel® outside the
United States)"

While I'm at it

I found a calendar on the Pituitary Network's website. They also listed this event:

SAVE THE DATES
Pituitary Days 2008
Laws' Lecture Series
University of Virginia Pituitary Clinic

Pituitary Days 2008 and will be Friday, April 11th 2008 and is designed for patients and their families. The second meeting is the Laws' Lecture Series and it will be Saturday, April 12th and is a CME-sponsored event for physicians and clinicians.
Details to be announced.

More Date Saving (New York)

Sunday November 11th, 2007 the Brain Tumor Foundation is having a Brain Tumor Awareness Day. I know a pituitary tumor isn't exactly a brain tumor, but they let me go to their support group back when I was first diagnosed so if they'll accept us, we can accept them! (And I'm sure they're happy to accept donations from anyone.) Actually, meeting people at their support group was really nice. I was so desperate to find anyone with any kind of similar experience that meeting people who had gone through the whole surgery ordeal was very comforting. Details and RSVP on their website.

Save the Date (Los Angeles)

Cedars-Sinai Pituitary Center is having a Pituitary Patient Awareness Day on Sunday December 9, 2007, from 9:30 AM-3:00 PM. I know because they sent me a a letter, but I'm having trouble finding any info about it on the web that I can link to. Okay, I'll retype the stuff here:

"Please Join us for an informative day- current treatments, follow-up care and emotional well-being. Friends and family welcome!"

You're supposed to RSVP but I feel weird about posting someone's phone number on the web without asking permission first, so if you want to RSVP you can email me and
I'll send you the info.

Familiar Story

This story showed up in the feed that was added on the right hand side of the page....I thought the author did a good job of describing a classic, long-undiagnosed case of acromegaly.

My First 2 Weeks with Sandostatin

The following might be too much information for most people, but as I was experiencing extreme side effects, my boyfriend was desperately searching the internet to determine if the severity of my side effects were considered typical. He had trouble finding comments from people who were using Sandostatin to control acromegaly, so I thought I'd toss my experience out there.

Sandostatin has a very contradictory list of side effects- it's almost comedic. Sandostatin is sometimes prescribed to control diarrhea, but when used in other situations in can cause diarrhea It can also cause constipation. You can get Hypoglycemia or hyperglycemia.

I had the sub-cutaneous test and experienced slightly loose stools, but other than that, I was fine. I therefore assumed that everything would be fine with the LAR (long acting) dose. Here's what happened:

Friday: Got the shot. Soreness from injection made it hard to go up stairs/stand up/sit down. Could walk OK but felt like I looked like an old lady. Slightly traumatized but overall, totally fine.

Saturday: Felt better, soreness pretty much gone. Noticed that joints seemed to be "popping" more- hips, shoulders felt looser.

Sunday: Felt good enough to go to ballet class. Noticed that feet and spine seemed more flexible.

Monday: Felt fine. Looked for signs that skin was less oily, but didn't see any dramatic difference.

Tuesday: Felt fine. Went to ballet class. Noticed that overall, tendons were looser.

Wednesday: Ate fast food for dinner. Went to bed feeling with stomach feeling gurgley, woke up in the middle of the night with gas, abdominal pain, chills, and diarrhea. Blamed fast food for giving me food poisoning.

Thursday: By midday, my intestines cleared and I felt good enough to have carrot cake after dinner. That evening, I felt abdominal distress again, and I suspected the carrot cake was also tainted. Did not sleep all night because of discomfort and diarrhea.

Friday: Like the day before, felt fine by midday and ate tuna salad at dinner and had same intestinal problems as the previous two nights. I blamed the tuna salad but started to suspect that something besides food poisoning might be creating the problem.

Saturday: Ate home cooked dinner at Aunt's house: Turkey, mashed potatoes. gravy. Slept through the night for the first time since Wednesday and digestion was almost normal. Thought maybe I had gotten through the food poisoning.

Sunday: Felt a little better. Went to hot tub/sauna spa with friend. Ate at salad bar buffet for dinner. Start to feel worse almost immediately after dinner- gas, diarrhea gurgling, chills, and sweats again. Chewed on some immodium tablets which helped temporarily (a few hours after each tablet), but couldn't sleep because of discomfort and going to bathroom.

Monday: Felt horrible again (still cramps, bloating, diarrhea Tried to take another immodium tablet to feel better. Within 10 minutes of taking tablet, ran to bathroom and projectile vomited a huge quantity. Feel better immediately, but was still concerned about diarrhea. Called my doctor, who believed that it was a side effect from medication, recommends drinking electrolyte drinks, and suggests going to ER if I can't keep liquids down. My doctor assured me that the side effects would gradually lessen. Dinner: rice "chowder" soup, carefully chewed.

Tuesday: Ate only soup, bananas, tea with honey and electrolyte drinks. Headache and tired but diarrhea is limited to the morning.

Wednesday: Still had diarrhea in the morning. Consumed only soup, tea, bananas, drinks, and really soft foods. Had weird burps.

Thursday: (Today) Still got diarrhea in the morning, but at least I can sleep through the night and I can eat a few things. I've lost 3 lbs, and I still have a headache whenever I stand up. I have to talk to my doctor next week about whether or not I should try to continue with Sandostatin. Of course I want it to be working but I kind of hope that it doesn't so I don't have to risk going through all of this again. Maybe it will be better once my body adjusts to it.

largest man in the world; a mystery

Watching a special on TLC about the largest man in the world with a pituitary brain tumor that is very strange. He was diagnosed when he was 12 because of headaches. His brain had swelled to dangerous levels so they implanted a tube in his brain to drain off the fluid caused by the growth of the brain tumor. He has had no treatment since then but has kept growing. In fear for his life an endocrinologist who heard of his case went to visit the man and found that he had no abnormal levels of GH or IGF-1. They did an MRI and found that the tumor had died on it's own for reasons they cannot explain. So the big mystery is WHY DID THE TUMOR DIE? HOW? How did relieving the pressure on the brain kill the tumor? What is the link? Anyone care to speculate?

Hypochondriacs, Rejoice!

I was listening to the radio today, and the author of the book pictured above was talking about all the crazy stuff in our environment that causes cancer or may cause it. I know we don't have "cancer," but we all had tumors, which is close. I think about what might have caused my tumor all the time. The doctors all say, "A single cell mutates, and it goes from there..." but that's not really an explanation. What caused that mutation? For most people, it's not hereditary, so it must be something external. I've talked to some of you about your suspicions, and I totally believe they are true.

Since the tumor, I've become pretty paranoid about freaky chemicals and any kind of radiation. I am frequently amazed at how indiscriminate most people are about the fumes they breathe, the chemicals they slather on their skin, and the "food" they eat. I'm all for the wonders of modern technology, but I also agree with the author that we we need to be more careful before we determine some newly synthesized molecule that has never existed before is "safe." The medical world seems to focus so much on treatment, where's the prevention aspect of it?

If you're interested, you can listen to the radio interview here. There is some discussion about hormones and chemicals that act like hormones being all over the place and wreaking havoc. I wonder, has the prevalence of acromegaly gone up over time? I would hope that detection and diagnosis is getting better, which might make it seem like the numbers are going up, but is it actually occurring more?

If anyone wants to read this book and write a review of it here, I would love to know more.

dopamine

I am wondering about everyone's diet. I believe it is the tumor that turns us into carb addicts because the tumor feeds and grows on serotonin, which is why doctors prescribe dopamine in an effort to bring balance back to the brain. How much do you think about dopamine/serotonin/acetylcholine? If you've had the surgery, do you still eat as you did before? Have the doctors told any of you about the carb thing at all or about the need to change your eating habits or have they allowed you to eat whatever you please? For the record, I have not had any surgery in my treatment, just dopamine agonists and a change in my diet.

Yao Defen

I just watched the TLC special on the world's tallest woman. I'd heard about her previously on the Internet but wanted to see her story. It airs again on Oct. 7th and 8th. I really feel for her tragic situation.

Yao Defen Appeal

TLC -World's Tallest Woman

Ken's Cool Video

Ken just updated his blog with a bunch of good news, and also posted this cool video that he made from his MRI's! Check it out!

Mark your calendars: January 26, 2008

http://med.stanford.edu/neurosurgery/patient_care/pituitary/pituitarypatientday.html

(update: link is broken! Info is still available here: http://www.pituitary.org/news/pituitary_events_calendar.aspx)

Hello everybody!!

Hy! My name is Almu, and I am from Spain. I am 27 years old and was diagnosed on June 20th, 2006. This is my first post at this blog (sorry for this) I hope I can publish more often posts from now on.
Currently I am waiting for results from my second surgery, so I am having no medication at all, just Cortisone in case they damaged my healthy pituitary during operation.
I will post again soon!!

Update: Sando test canceled

Because the my health insurance company said they would not cover the test! What is up with that?!?? More hours on the phone talking to customer service agents, I'm sure...... I feel sorry for people that have to do that job... it must be hard defending coverage policies to sick people. Health care reform, take me away!

Kevyn Aucoin

So I was a the bookstore the other day and I saw this book about noted acromegaly patient, makeup artist Kevyn Aucoin. I remember growing up and reading fashion magazines and totally admiring him, hoping that one day I would be famous enough for him to do my makeup and make me look amazing as all the people in his photos.

Anyway, so according to this book, he was diagnosed with acromegaly on September 11, 2001. That's the same day as the WTC attacks! He was in L.A., but as a "New Yorker," this must have been an incredible DOUBLE trauma for him. It's never really clear but I have suspicions that he didn't actually die from acromegaly directly.... I think he couldn't handle the stress of dealing with acromegaly, so he got in to drugs, and I think THAT's what killed him. The EMOTIONAL part! (Well, it's hard to say if they are really separate, since hormones and emotions are so closely tied). Anyway, he was definitely in rehab after he was diagnosed. It makes me sad because I can totally identify with freaking out about having a tumor and all that, and feeling alone even if you have supportive friends and family.

Anyway, I wonder how things would have been different if he had some kind of acromegaly support network, like if he had people like us to help him feel understood and less of a "freak." I know that corresponding with all of you has definitely helped me less isolated. Maybe if Kevyn had the support that we have, he would have been able to get through the rough spot.

Anyway, if you are interested, I would leaf through this book the next time you are at a bookstore. It was kind of amazing to see discussion of acromegaly in print, because almost everything I've seen so far has been on-line.

PS this book only talks about acromegaly on a few pages, and the rest is all comments from celebrities about how much they loved him, stories from his childhood, and his makeup tips. Actually, it was kind of sweet, a lot of the celebrities mentioned how big his hands were! They would know, because his hands were always touching, working on, and in front of their faces. They would say how large but gentle and skilled his hands were.

Sando test next week!!

So I scheduled it! I'll have my sub-cutaneous sandostatin test next Thursday. They'll inject small amonts of sandostatin to see if there is any reaction, if all goes well, we'll do the intra-muscular injections once a month.

I hope it goes well. I'm not really expecting to have a reaction, I generally don't get side effects, although I'm starting to wonder what kinds of things I should be blaming my cabergoline on (my headaches? the "benign positional vertigo?" dry eyes?)

I'm going through a bit of an upheaval with my health insurance though.... I think I might switch to a managed health provider (HMO) like Kaiser. That's kind of scary to me because I've heard so many ....stories. But I've already had my surgery, and that's probably the #1 thing I would be most picky about choosing a doctor for. I'm switching over because I can't afford the co-pay on sando- it's SO expensive that even if I have coverage, I'll be paying a lot for each shot. That stuff adds up!

So I'm going to try to work with my new doctor as much as possible, and then once things get stable and normal (hopefully), I'll switch to the HMO. Like I said, I'm not doing this out of preference, it's as financial thing. :(

Sandostatin and GH update

It seems like I'm doing extremely well. I just had my 4th Sandostatin shot. Physically I'm finally starting to look like I did 10 years ago, I'm very excited! My GH is still staying at 1.4. I need to get my IGF-1 re-checked soon. I still have some headaches but that may be related to my hypertension. I'm trying to keep my blood pressure controlled with prescription medication, but I've read some home remedies really work. I'm hoping to try a combination of garlic and calcium, or possibly the apple cider vinegar and see if I can get off the prescription meds.

I also talked to my primary care doctor about doing the shot in office. She refused in the beginning, but I just found out her husband and partner in the practice has done the shot before. They're going to start doing them for me starting next month so I don't have to travel to San Francisco!

How is everyone else doing??

Always suspected

You know the motivational speaker, Tony Robbins? I always thought he looked like he might have acromegaly (or take GH for body building/weight loss/performance enhancement, whatever), and he DOES! Check out his wiki page! He's been added to the acromegaly wiki page too.

I wish he would talk about it a little bit more.

$icko

Hey guys,

Have any of you seen the new movie that's out, Sicko? It's a documentary about the American health care system. Supposedly, America is the only developed nation in the western world that doesn't have socialized health care (instead, we have the health care industry).

It's a very interesting movie. Just don't mistake it for a piece of journalism, because it's not. It's a very biased look at the American health care system. Politics aside, it is a very emotionally moving film, and hopefully, a wake up call for Americans to start discussing health care.

Since we are such a diverse group of people (American, British, Spanish, Philippina) and we have all had more medical attention that most of our peers, I think we represent a good sample of different health care systems. I've emailed a few of you privately about how your treatment has been handled, but I was hoping people would be willing to discuss these things publicly. Namely,

• What do you think are the benefits and shortcomings of your particular healthcare system?
• How would you describe the quality of healthcare that you have received?
  
• How has your illness influenced your ideas about the role of government or private industry in health care?

Here's my story:

Personally, I consider myself to be incredibly lucky. Before I was diagnosed, I had given two week's notice (I quit) to the job that was providing my health insurance. (I intended to go without health insurance until I found my next job, because I figured, I'm young, active, and what are the chances of getting hit by a car?) I guess my manager really liked me because he asked me to reconsider my departure and suggested that I take an extra two weeks away from work to just relax and think about coming back. I was pretty sure I didn't want to continue at my job, but since taking two weeks away was equivalent to what I was planning on doing anyway, I accepted his offer.

Within those extra two weeks, I went to get an eye exam while I still had coverage, and the eye exam led to the discovery of my pituitary tumor. I told my manager the news, and I was allowed to take a medical leave of absence instead of quitting. This single act made the difference between going through acromegaly with and without health insurance.

It's terrifying to think about what might have happened if my manager hadn’t offered me those two extra weeks. Without insurance, I might have found out about the tumor while uninsured and the cost of my MRI's, my surgery, my blood tests, and appointments with all kinds of specialists would have cleaned me out and put me in to enormous debt. The retail cost of my medication (cabergoline) right now is ~$1,020 a month, and if I were on Sandostatin, I hear it’s $2,000+ a month. That’s like a freaking mortgage! I also feel lucky because I feel like I’ve had really excellent care, but if I were uninsured I might not have been treated so well. No one wants to choose a neurosurgeon based on affordability.

There have been times when I have been incorrectly billed for things that should have been covered, so I would have to pay several hundred dollars while I argued with the health insurance company for reimbursement. Luckily, I was able to absorb the costs while the billing was getting straightened out, but again I wondered, what if I were living on a tighter budget? Also, having to argue with the insurance company (who would often tell me I needed to argue with the hospital's billing department, who would direct me back to the insurance company) is really annoying. It's precious time ticking away while on hold, pressing numbers on my phone's keypad to get through automated voice menus, explaining my situation from the beginning over and over again to different customer service reps, taking down tracking numbers to document my phone call, filling out forms, etc, etc. It's just an added aggravation that I don't need when I'm already stressed out about my health.

Even with insurance (believe me, I’m so grateful I have it), I still have co-pays and premiums to pay- I just feel lucky that I am able to afford them. If I were someone who was just scraping by or supporting a family, I'm not sure that I would be. (Note: The premium for my insurance plan is twice as much as some other ones that are available because I want to be able to choose any doctor I want.)

Even with insurance, I live in constant fear of loosing it- if for some reason I have a lapse in coverage, I'll have what's called a pre-existing condition and be "un-insureable." What if I want to pursue a new career? What if I want to take time off? With COBRA the costs of coverage is ~$500/month, just to continue coverage, but even then COBRA only covers a person 18 months maximum. That might seem like a long time, but the possibility of not finding a new job with health insurance in certain time frame is a lot of pressure and downright scary.

I think American's dependency on health insurance definitely affects their freedom. Like the example above, people get stuck in jobs they don't like because they can't go without health insurance, and the cost of insuring their family out of pocket is unrealistic, or they have a pre-existing condition. I know people that stay in relationships longer than they should in order to retain their health insurance through their spouse, and I also know people who fake domestic partnerships in order to gain coverage. The hoops people are jumping through sound absurd when people in other countries can just walk in to a hospital and walk out without paying anything (please correct me if I’m wrong).

Any and all comments are welcome and appreciated. (Since we are such a diverse group, I'm expecting some differences in opinion!)

Has Anybody Done This Survey?

ACROMEGALY SURVEY

I haven't completed it but I looked at the questions and I liked that a lot of them regard quality of life as opposed to just symptoms and treatment. Looking at the questions were very thought provoking, because it makes you take inventory of yourself.

If anyone is comfortable sharing their answers, I would be interested in reading them...

Hey Everybody!

Great idea Ellen. I'm glad to hear Almu's surgery went well, and that Alecia's found Cess. It's amazing to me that there seem to be so many of us out there when we have such a rare disease. Thanks again for all of your support. It's been nice to exchange stories and information, to know we're not alone in this.

Letter to Almu

Long story short: Back when I first "met" Almu through her blog, I was confused about what stage of diagnosis/treatment she was in because she was writing about her acromegaly gradually from the beginning, and when I picked up on the story she had only gotten to the pre-surgery part. I thought she had just been diagnosed and was on medication, waiting to have her first surgery.

There were so many things I wanted her to know, so I worked on a letter to her for a few days. During that time, I realized that she already had her surgery so most of my letter wasn't really that relavant. I ended up abandoning the letter and sending her a shorter email instead.

Now that Alecia has introduced yet another acromegaly blogger to the bunch, I started thinking that maybe there are people who have been recently diagnosed looking around on the internet for support. So I dug up the letter I wrote Almu and I'm posting it here, in hopes someone in need will read it and benefit from it. Here it is:

Dear Almudena,

Hello! My name is Ellen, and Alecia sent me an email with a link to your acromegealy blog. I’m sorry to hear about your recent diagnosis. I’m sure your whole life was suddenly put into a new perspective and you’re overwhelmed with things to think about.

When I read about your diagnosis, I thought about the long road ahead of you. I want to tell you that things may get rough here and there, but overall, you will be OK. It’s great that you have discovered other people on the internet with acromegaly, because we are all here to support each other. Reading everyone else’s blog has been so valuable- I only wish I had found everyone sooner. Even though I have met a few other people with pituitary tumors in person, it was hard to find anyone with acromegaly, except on the internet.

When I found out about my acromegaly, I had the same thing you were having - losing vision in the upper outer corners of the field of vision (bitemporal hemianopias), but I only noticed that my vision seemed blurry. I went to get new glasses and when that didn’t help, I thought it might be allergies making my eyes irritated. I went to an opthamologist to get eyedrops but then she noticed that something else was affecting my vision. She ordered some tests and it turns I had a tumor pressing on my optic nerve, just like you. I had noticed my hands and feet were bigger, as well as my tounge(!), plus I developed acne which I never had as a teen but when I had mentioned these things to doctors before they dismissed them saying they were nothing to worry about. I was very upset that I had gone undiagnosed for so long, and it took a while to get over that. It makes me paranoid now, every time I get a headache or I’m just not feeling “right” I worry that it could be something serious lurking, like the way acromegaly was.

Have you ever had surgery before? You should know that the actual surgery is probably the easiest part of this whole ordeal. There’s nothing for you to do but fast the night before and then put on a hospital gown and take a nap! The doctors do all the work. We are lucky to be living in the present, because 20+ years ago patients didn’t have access to the procedures that we do now, which make the operation much safer and easier. Even the recovery is surprisingly easy- it’s not fun for sure, but it’s amazing how quickly the body can heal. You don’t have to tell your body to heal or make any effort- your body just heals on its own.

For me, the mental and emotional part of dealing with acromegaly has been much more painful than the needle pricks during blood draws and even the surgery. The time between my diagnosis and my surgery were the worst, because of my anticipation and fear of the unknown. I actually stressed myself out so much, I went to the emergency room because I gave myself a headache and the doctors thought it might be the tumor hemorraging or something! Turns out it was just all the tension in my body building up.

I know you have to take your meds for a while before they’re willing to operate, so you’ll have a lot of time to think about things… and there are a lot of things to think about when faced with acromegaly. In preparation for surgery I highly recommend taking time off from any job you don’t really like and don’t bother talking to people that annoy you. Instead, spend time with people who adore you, go to fancy restaurants, go to a spa, eat really good food and spend time outdoors in the sun (or do whatever you enjoy doing). You should really try to have lots of fun and relax as much as possible. Relaxing is good for your mind and your body. I think blogging/keeping a journal helps a lot too. It can help you understand what you are feeling, and it is interesting to be able to look back later on and gauge how far you’ve come.

Also, please don’t feel bad about the doctors saying you have an “obviously acromegalic face.” I think doctors just say that kind of thing just to make themselves sound more confident. But really, if your face was so obviously acromegalic, then wouldn’t you have been diagnosed a long time ago? When I looked at your picture, my first thought was that you look a little bit like one of my friends (who doesn’t even have acromegaly!). I think you look very pretty, actually. But I know how much acromegaly can wreck self-image. Sometimes I stare at my face (and hands and feet) trying to figure out how much of my appearance has changed from the acromegaly and I wonder what I would look like if I were “normal.” Please try not to focus too much on the superficial things… it’s hard in our super-superficial culture, but a lot of things in our culture and messed up and stupid anyway. Part of having this health drama makes me value the things in life that are meaningful and I don’t care so much about the transient things anymore.

Anyway, please feel free to write me whenever, with whatever is on your mind. I hope that I can help you in any way. Take Care! I will check your blog frequently for updates!

Sincerely,

Ellen
(polarchip.blogspot.com)

Oh No!

You know what? I started this blog a while ago and I didn't mean to make it public (I thought I set it to private), but I was wrong and Alecia totally found it!

Obviously I haven't been working on it too hard, and it's nowhere near being ready for people to actually see (Description: "..... living with acromegaly adsgsag"). But Alecia already mentioned it on her blog, so I'd better shape it up quick!

Rambo Acromegalo!

Wow, everybody wants to have acromegaly! We're such a lucky bunch that we don't have to break the law to get our excess growth hormone.

From TMZ.com:

Stallone Pleads Guilty to Hormone-Import Charge

Posted May 15th 2007 8:33AM by TMZ Staff
Sylvester StalloneSylvester Stallone pleaded guilty this morning in a Sydney court to bringing banned muscle-building hormones into Australia, and will be sentenced next week.

The actor didn't appear in court, but said in a letter to Sydney's Downing Center Local Court that he had "made a terrible mistake" because he was "ignorant" about local laws, according to the AP. Stallone was accused of bringing the restricted growth hormones into Oz when a customs search in February turned up 48 vials of Jintropin, a human growth hormone. Then, said a prosecutor yesterday, Stallone threw four vials of the male hormone testosterone out of his hotel room when customs officials searched it.

The maximum penalty for Stallone's offense could be 5 years in prison and $91,500 in fines, but Stallone will face up to $18,500 for each charge because his case is being heard in local (not federal) court.

GH everwhere

two things: Supposdely Anna Nicole Smith was taking GH at her time of death! She was using it for weight loss purposes, (TrimSpa suckas!) but still, it's been in the news.

Also, there was some article on digg about how GH is like marujinaa and steroids are like crack or something like that. I feel like GH is all over the news lately! Well folks, I have extra and I'd be happy to share.

Acromegaly Support

Hey Guys,

I was thinking that we could start a new blog that would be like a faux RSS feed/meta blog of all our individual ones. Like we would write and post to our individual blogs as before, but when we write something about acromegaly, we also post it here. Or maybe you want to post something here about acromegaly that you don't want to post on your personal blog.

That way people with Acromegaly looking for support could find one centralized place to find all of us... We can all be team members on this blog! And of course there would be links to our individual blogs.