We have scheduled Acromegaly Community’s first annual gathering for patients and their families on the weekend of May 6-8, 2011 in Las Vegas, NV at the Mirage Hotel.
The plan is to make the subject matter of the first weekend equally supportive and informative, and full of camaraderie. Since it is our first official get-together, we want to make sure we offer a spectrum of knowledge as it relates to Acromegaly, and the major needs and concerns of Acromegalics, their friends, and their loved ones.
We already have a top endocrinologist, psychologist who specializes in pituitary issues, and professionals to work with patients on journaling for their own self-support and reporting to doctors. We are still working on locking down a top-flight surgeon, as well as a physical therapist to discuss proper body movements, and working around joint pain.
This is a weekend for you and your loved ones. Make sure you reserve early, and get the discounts!
***Feel free to invite people you think would want to attend.
-We are working on potential scholarship opportunities. If finances could stand in your way of attending, please stay tuned!
I just got a flyer that says Cedars-Sinai Medical Center's Pituitary Patient Awareness Day has changed their date. New info:
Pituitary Patient Awareness Day
Sunday, January 16, 2011
9:00 AM - 3:00 PM
Cedars-Sinai Medical Center
Harvey Morse Auditorium
8700 Beverly Blvd, Los Angeles, CA 90048
RSVP to Allison Pitts at the Pituitary Center, pittsa [AT] cshs [dot] org
I'm actually excited, because I wasn't going to be able to make the previously scheduled date, but I might be able to go to this one! Hope to see some of you there!
About 2 weeks ago, Jenny and I drove to San Francisco together to meet some very special people- Tanya Angus and her mother Karen! They were in town for a new endocrinologist appointment at UCSF, and they were so kind to let us spend some time with them even though they had a super long day driving from Las Vegas to San Francisco with the AMR/MedicWest ambulance team. Some of the ambulance drivers stopped by while we were visiting and I was really happy that I was able to thank them in person for the incredible service they have performed for Tanya (that's an "HONORARY PARAMEDIC" t-shirt she's wearing!), Karen, and indirectly, the whole acromegaly community.
I also had a chance to thank Tanya and Karen in person for their work in raising awareness of acromegaly. Sharing such personal struggles publicly can be tough, but they are willing to do it because they know that people need to get the word out about the disease. I also thanked them for being great role models because even though they are dealing with so much, they still remain incredibly sweet, kind, welcoming, and wonderful people!
Karen is amazing because she knows SO MUCH about everything related to acromegaly - symptoms, medications, new technologies and new developments. She's totally on top of everything! She knows how to talk to doctors in order make things happen and she never stops looking for solutions - I wish that everyone with acromegaly could have their own personal advocate like Karen!
Tanya, Jenny, and I chatted for a while about our lives, which was pretty remarkable because how often do THREE women with acromegaly, all in their thirties, get to hang out? We shared a lot of personal experiences, such as how our bodies have changed and how acromegaly has affected our lives, and our thoughts wondering what might have caused our tumor to grow.
Most of all, it was nice to just hang out and be supportive of each other.
Many thanks to Tina for helping me get in touch with Tanya and Karen, and I hope that she can join us for the next visit! More info about Tanya and Karen's trip is available on their local news website, where there's a great videos of Tanya smiling - I love seeing her so happy!
In the seemingly perpetual battle to rid this planet of cancer, a team of neurosurgeons from Washington University are using a new MRI-guided high-intensity laser probe to "cook" brain tumors that would otherwise be completely inoperable. According to Dr. Eric C. Leuthardt, this procedure "offers hope to certain patients who had few or no options before," with the laser baking the cancer cells deep within the brain while leaving the good tissue around it unmarred. The best part, however, is that this is already moving beyond the laboratory, with a pair of doctors at Barnes-Jewish Hospital using it successfully on a patient last month. Regrettably, just three hospitals at the moment are equipped with the Monteris AutoLITT device, but if we know anything about anything related to lasers, it'll be everywhere in no time flat.
Do any of you exercise daily? It's something I've undertaken slowly and carefully. I only exercise maybe 15-30 minutes, but I make sure to do it daily. In my case I think it's really helping to combat side effects of Sandosatin like muscle pain and headaches. And I also have more energy and endurance.
This is fantastic! Another survey to get involved in, but I actually helped in building and crafting this one. The information they are looking to learn is very exciting! These are professional people truly interested in learning about the disease from us. Lets make sure we get a lot of interviews set up.
Market Modelers is looking for individuals who have been diagnosed with acromegaly and are currently undergoing some form of treatment to participate in a 45 minute telephone interview as part of a new research project. There is an honorarium to those willing to participate. If you are interested or you have questions, please send an email to survey@marketmodelers.com and include your contact information (name and phone number). We will contact you to schedule an interview.
The TV documentary about Tanya Angus, "Help! I'm Turning Into a Giant," is being rebroadcast in the next few days. The next airtimes are Aug 15, 9:00 am and Aug 16, 1:00 pm. Thanks to Tina for the tip!
In case you haven't heard, Tanya's surgery that was scheduled for this summer was cancelled, despite the support of her local community to provide custom transportation to get her to the hospital. Tanya and her family are having a tough time with the setback, so your thoughts and prayers are appreciated! Check out Tanya's website or blog and leave some encouraging messages!
Another show on the life of someone living with giantism is coming up Sunday, Ausgust 8 at 10/9c. I received this via e-mail from one of TLC's publicists:
"At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.
As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the 'World's Tallest Man' which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams."
Be on the lookout for this AWFUL law! I am totally afraid of a domino effect. Legislators should not be allowed to decide our pain threshold or punish our doctors if we are in pain! I fear doctors fearing prescribing sufficient pain meds.
If people are interested in starting a letter/email campaign, let me know. I can work on one for you to send to your congresspeople.
And I interpreted it as a bird eating a pituitary tumor! I asked the woman wearing it where she got it (partially because I felt awkward for staring at her chest for so long and I wanted to break the tension) and it's from an online shirt company called threadless.com. The artist says,
"I taught a human anatomy lab this semester as a lowly undergraduate TA. The lab coordinators are great educators, and I wanted to thank them for their time with a unique gift.
This design was based on one of their teaching analogies about how the midbrain, pons, medulla oblongota, infundibulum, and pituitary gland resemble a hummingbird feeding from a flower."
The article describes a woman who was diagnosed with acromegaly and was experiencing neck, back, and facial pain. I myself have a lot of neck (and shoulder/head) pain, and it often does indeed feel like my head is too heavy for my neck to support. Is acromegaly actually making my head heavier? I often feel like my skull is getting thicker all around. If people are experiencing growth in their jaw and frontal bossing, this seems possible.
I have gone to physical therapy to learn neck strengthening exercises, and I have found that massage has been very helpful. I'm willing to try chewing gum and using a soft cervical collar (suggested in the comments) to see if it helps.
Some other similarities that I identified with were a long period stress and misdiagnosis of a "severe illness that had left her doubting her own sanity."
(Note: I know we have readers from all over the world, and even though this post is targeted towards people in the United States, no matter what country you live in, you should still speak up and raise awareness of acromegaly!)
I subscribe to lots of "Action Alerts" for a several different causes, some of them health related. Today I received an email urging me to contact my Representative and request an increase in research funding for a particular disease:
"Next week, a powerful House of Representatives’ appropriations subcommittee will decide how to spend billions of dollars on public health and research."
Well, the be honest, everybody already knows what causes the disease that this email was about, but what we don't know is what causes acromegaly.
We should get active and make our voices heard! We want more research funding for acromegaly!
Then tell your Rep you want more research done on the causes, prevention, treatment, and cure of acromegaly! Then tell your friends to do the same! This is our government, let's make it work for us!
I hope you are all doing well! This weekend is a long weekend here in the United States, so for those of you who have extra free time this week or next, I hope you are enjoying it!
There have been lots of progress lately in acromegaly treatment! The following news is from the "Acromegaly News" feed reader in the right-hand sidebar (scroll down a bit, it's the sixth heading down), and in case you haven't been watching, I'll mention the stories that have caught my eye recently.
There are two articles about a new drug called Chiasma, which is the brand name for Octreolin. One interesting thing about Octreolin is that it can be taken orally, which could potentially mean no more injections(!).
Finally, some accuracy regarding her story! Tanya's acromegaly has not yet been controlled and she is scheduled for surgery later this month. Stay tuned to Tanya's blog for updates!
You may remember Jon Danzig from England, who wrote the article, "Acromegaly: My DIY diagnosis." I remember finding that article online back in 2007 and immediately identifying with the frustration of missed diagnosis, and at the same time I was filled with excitement to see that Jon was working to get the word out about the disease.
I've since emailed with Jon and had the opportunity to get to know him better. I'm pleased to point out that he has a new article up at the Testosterone Deficiency Centre's website, entitled, "When doctors are wrong." The title refers to his misdiagnosis as described in his previous article, but it also refers to statements made by a London pituitary surgeon who claimed in a letter to Jon, "for the most part acromegaly is relatively symptom free..." I'd like to introduce that surgeon to all the acromegaly friends I have met online, and have him tell us to our face that acromegaly is symptom free! That statement could have cost Jon his insurance coverage, and it has cost Jon his relationship with a pituitary charity that he formerly raised funds for.
It's a very personal and emotional article, and absolutely worth the read. You should check it out!
Jon, thank you for being so open and honest about your experience with acromegaly, and thanks for raising awareness of the disease so that others may be properly diagnosed earlier!
My husband attended an event last week where one of the speakers was multiple sclerosis patient and advocate Scott Johnson. My husband brought Mr. Johnson and his organization, Myelin Repair Foundation, to my attention because they have a new and innovated approach to finding cures for diseases, and we share the same belief that "The system for making new drugs is BROKEN."
I believe that patients are not getting an adequate return on the billions of government, non-profit and industry dollars being spent on the research and development of new patient treatments.
I believe that academic scientists, government funding and regulatory agencies, non-profit disease research foundations, commercial biotech and pharmaceutical companies, and entrepreneurs should aggressively seek new ways to accelerate the pace of medical research and the development of new patient treatments for the billions living with diseases who can’t afford to wait.
If you agree with the above points, you can show your support by signing the Patient's Manifesto online. I haven't read through the fine print of what their organization is all about yet, but I was excited to see that there are people challenging the current system and I feel a strong kinship with multiple sclerosis patients because for both diseases, very little is known about what causes them, and we share many of the same experiences that dealing with a chronic disease involves.
It sounds like Mr. Johnson started this organization because he was diagnosed with multiple sclerosis, and the wasn't satisfied with the options available to him. Thanks for being another inspiration for our community, Mr. Johnson! The acromegaly community is getting active and taking matters into our own hands, just like you!
I have worked with this company before. They are very reputable, and great to work with. They are not looking for too many people though, so please move quickly! Sorry, US only.
Hall and Partners Healthcare, a U.S. based healthcare research agency has been engaged by a major pharmaceutical manufacturer to conduct a study intended to explore the experiences of acromegaly patients as they navigate through diagnosis, treatment, and life with the disease. Participation in this study will ultimately result in helping to develop new treatments and support programs that meet the needs of physicians and patients such as yourself.
The study consists of a 45" telephone interview to be conducted at your convenience during the end of June. The study is open to all U.S. residents; however we are accepting only 10 participants total across the country, so space is limited.
Please note you will not be asked to prepare for this interview in any way, and the research will be conducted in strict accordance with all pertinent privacy laws and regulations, including complete confidentiality of all study participants.
In appreciation of your time and opinions, you will receive an honorarium of $150 upon successful completion of the study.
For more information on how you may participate in this important research study please contact:
Connie
888-770-8660
If you would like to verify the purpose of this study, please do not hesitate to contact:
David Horn
Research Manager
Hall & Partners Healthcare
646 330 5947
d.horn@hallandpartners.com
Every once in a while I get frustrated about the treatment options available for acromegaly, but then I'll hear about new research being performed or new medications being developed and then I will feel a little better about the whole situation. Doctors, drug companies, and researchers do care about us! In that context, I thought I'd share news of a new drug being tested called Pasireotide.
"Conclusions: Pasireotide is a promising treatment for acromegaly. Larger studies of longer duration evaluating the efficacy and safety of pasireotide in patients with acromegaly are ongoing."
I know this drug won't be for everyone, but I'm sharing this news to remind people that research is always going on for new treatments, so if you are like me and your levels are still not controlled, there is always still hope!
Has anyone here participated in a clinical trial of it? I'd love to hear about your experience with it!
I am starting to build the page for the website for the Acromegaly Community Speakers Bureau. This is for patients and their families. If you are interested, please email me a head shot, bio (appx 2 paragraph), and the focus of what your speech(es) would be on. Please remember, we will need to chat by phone so I can hear you deliver it first! :) No geographic limits!!!
I'm so excited that there is now a centralized place on the internet where I can learn more about Tanya! I've said this before, and I'll say it again... I'm so grateful for all the work that Tanya has put into spreading the word about acromegaly. I truly believe that a REAL CURE is on the way, and it will be a result of people who are motivated by people like Tanya.
I found a new video I haven't seen before on Tanya's website, and it's so delightful to see her smile!
I often find myself explaining acromegaly to people, and I want to help them remember what it is so that they can explain it to others and increase awareness of the disease. I went online to a website that offers free business cards, and created this mock-up of a little card I'd like make.
I figure I can hand them out to people I talk to, they can look up "acromegaly" online later on or they can pass it along to a friend. I think it might be useful to share these with people who are in a position to identify people who might be affected as well- people who work with people's hands, feet, skin, teeth, or faces.
What information would you put on an "Acromegaly Awareness" card?
Including: Adult Growth Hormone Deficiency, Panhypopituitarism, Cushings and Acromegaly!
June 11-13, 2010
Chicago O’Hare Marriott Chicago, Illinois
All-Inclusive Convention Registration Fee: $155 for members* $190 for non-members* (includes a 1 year membership) *Registration fee includes Friday reception with appetizers, Saturday continental breakfast and lunch, and Sunday continental breakfast and lunch for one attendee. Additional attendees in your family can choose to pay $95 each for all-inclusive package above.
If you're planning on going or have been to this event in the past, please let us know in the comments!
I immediately felt so comfortable and open talking with them. We had dinner together, and it was such a relief to be able to talk about this disease, this life, without having to cushion things or explain. We just had an understanding. And we didn't just talk about acromegaly the whole time- we talked about our lives like old friends do when they're catching up.
Being able to converse in real time was so fantastic - email, chat, and even video chat have a delay between responses which you don't realize until you're sitting in person with someone. As wonderful as it is to have an online community of acromegaly friends, meeting in person is important too! I hope that there will be many more opportunities for us meet up again, and I hope that we can gather more people to join us as well.
I wanted to share a little tip I've found to be useful for managing my acromegaly. Many of you are probably doing something similar on your own, but in case you aren't already you should consider keeping an accurate calendar of:
How you're feeling every day (symptoms, appetite, energy level, etc)
Other things going on in your life (stress, exercise, diet) that may have an effect on your acromegaly
When you are due to receive your medication/treatment and what dose (I keep track of the date and which side my Sando shot should be on), and if it varies, when you actually get your medication
When your prescriptions should be refilled and picked up
All appointments: Doctors, MRI, colonoscopy, tests
When you had blood draws, and then update the calendar entry with the lab results
Beause there's simply to much to try and keep in your head! I have a special calendar specifically labeled HEALTH where I track all of this stuff. I keep my calendar online through a free service (most email accounts offer this), which even allows me to get notifications and reminders if I want.
Are there any other bits of health info you think should be kept on this calendar? Do you have your own tip to share? Please let me know in the comments!
>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c << A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.
Below is my submitted article. They didn't change much, but I figured I would share both versions.
Honor Rare Disease Day; Someone you know may be
We are all around you, and you frequently don’t know it. We have appointments to see doctors with specialties you cannot pronounce, and have experience going for tests that no one wants to think about. We are the “winners” of life’s lottery in a way that no one would ever want to win. We are patients with a rare disease, and February 28th is our day to “celebrate”.
On the last day of the month, the world recognizes Rare Disease Day in honor of people living with rare, or orphan diseases. Patients with orphan diseases are not necessarily infectious or dangerous, we are merely alone. No ribbons, no support groups, and hardly a celebrity willing to lift a finger. So what qualifies as a rare disease? These are diseases that are considered to be life-threatening, or chronically debilitating. The disease I suffer with is a disease called Acromegaly. While most readers have never heard of this disease, its effects are very real to me and the people who love me. This is a disease without fame, but with dire, even fatal consequences if it goes untreated. The number of people diagnosed with Acromegaly are roughly 3 people per million. Not exactly cancer, so support is limited. Research is hard to fund, patient information is extremely limited, and emotional support for patients is virtually non-existent.
The problem for the medical companies is that research is not profitable when so few people may benefit from a new medication. I understand why this happens, but it doesn’t make treatment any more fun for the patients or their loved ones. Moreover, my insurance company is not thrilled that my medication costs $52,000 a year just for medication, and alternative prescriptions are actually more expensive.
The bigger problem for patients than the medical end is the emotional side of an orphan disease. I wasted a decade of my life telling doctors I did not feel well before I finally found the right doctor who diagnosed me. The reason it took so long is that the symptoms are severe, but cross over several areas of medical expertise. Since diagnosis, I have never met another Buffalonian with the disease, which can be very lonely, and nearly impossible to get advice from people traveling the same path. When I went online looking for information, all I could find out was stuff written for doctors, and the fact that it killed Andre the Giant. Now there is more support. I have actually made a lot of contacts and shared a great deal of information with my virtual friends on facebook and AcromegalyCommunity.com.
Rare diseases can be extremely lonely and scary for family members too. As frustrating as it is to be a patient without support, at least we know what we are dealing with; our friends and family only know what we tell them. Family may be afraid to ask questions of the patient, and they rarely have someone who can sympathize when their family member does not feel well.
If you have a friend or family member who has a disease you have never heard of, be supportive. Just because you have never heard of it does not make the symptoms any less real for them. If someone you care about tells you they have been diagnosed with something rare, please try to learn about it. It shows you care. If they need help, even if it is just a sympathetic ear, be there for them. They probably don’t know anyone else that has the disease to talk with, and your warmth means the world. While we may not always remember to say thank you, we definitely feel it.
Celebrate World Rare Disease Day. Someone you care about probably is.
Regarding Novartis' Q4 2009 results, PharmaTimes reports, "Turnover of the acromegaly therapy Sandostatin (ocreotide) rose 17% to $316 million." In a separate article, PharmaTimes notes that "Ipsen’s Somatuline (lanreotide) range of drugs for acromegaly and neuroendocrine tumours was up 18.8% to 36.5 million euros."
What is causing the increase in both Sandostatin and Somatuline demand? I could understand if one went up and the other went down, but both are up! Either people are increasing their dose, or more and more people are getting prescribed these drugs. What other explanations could there be?
Is this further evidence to suggest that acromegaly and pituitary tumors are on the rise, as Ms Moge suggests?
Hey everyone. Ellen and I were able to meet for the first time today! It was my first time meeting someone with Acromegaly and it was a great experience. I felt like we were old friends since we'd already chatted online. And it was nice to share with each other, knowing that we've gone through similar experiences, and can truly understand each other in that way. She and her husband were so sweet and funny. And truthfully I never would've suspected she had Acromegaly if I'd seen her on the street. Meeting with Ellen also made me realize how remiss I've been in following up with people. I've noticed many of you haven't updated your blogs and I hope you'll take the time to post and let us know how you are. I hope everyone is doing ok!
On the finding causes front, I'm wondering if any of you may have been exposed to pesticides regularly? We moved to our new home in 2001. We had a major ant problem and I started having our home treated for pests regularly. They sprayed outside the home every few months starting in 2001, and a few times a year indoors for the first year or two. I started showing visible signs of the Acromegaly in 2003.
Thanks, Jenny, for the insight! I had heard about a cluster of people with acromegaly in India where the local doctors suspected pesticide poisoning:
"These cases are very common in rural India where pesticide poisoning is rampant," said Dr Baldeep Khurana, a general physician."
Have you been exposed to pesticides? Please describe in the comments section! We need to gather more information because this merits a deeper investigation!
I hope that 2010 is the best year ever for our health. I have some really big goals for this year, and I truly believe that if we work together we will accomplish them:
1) Raise awareness about acromegaly
2) Find the cause of acromegaly
3) Find the cure for acromegaly
My dream is that one day acromegaly will be completely eradicated. Seem impossible? IT IS POSSIBLE! Look a the way that learning about human nutritional needs eradicated scurvy. We just need a better understanding of this disease. WE CAN DO IT! IF WE DON'T DO IT, NO ONE ELSE WILL. No one is more invested in finding the cause of and the cure for acromegaly than us, the people who are living with it either personally or through a loved one.
So let's pull in all our energy, contacts, and resources to work together to make this happen! Ideas:
1) Raise Awareness (and promote early diagnosis):
Continue to support the work of people creating awareness on the internet, like Wayne at AcromegalyCommunity.org. Wayne, you are an inspiration!
Reach out to celebrities with acromegaly (Tony Robbins, perhaps? Professional wrestlers?) and encourage them to be spokespeople for the disease. Maybe the loved ones of celebrities who have passed away due to acromegaly would want to help as well.
Get acromegaly written into an episode of House MD (TV medical drama that focuses on diagnosis of rare diseases) or some other mainstream entertainment vehicle.
Create a flyer or business card with information about diagnosing acromegaly to people who might be in a good position to identify potential cases of acromegaly
2) Find the Cause (so future cases can be prevented):
Work together to find commonalities between us - we're rare so we need to connect the dots
Learn as much as possible about our disease and gain understanding of what's going on in our bodies
During my last post, I did a little research on Anthony Robbins, the motivational speaker who happens to have acromegaly. I am hoping that he will become a spokesperson for acromegaly, so that the disease would gain more recognition and ultimately, more resources for research towards a cure and better treatment.
According to this bio, "In 1994, a routine medical check revealed a tumor in Robbins' pituitary gland. Robbins explains in Personal Power that the tumor was actually an adenoma that had infarcted several years earlier. Due to the pressure of the adenoma on his pituitary gland, he had circulating levels of growth hormone several times higher than what would be normal for an adult his age. This had resulted in a subclinical manifestation of the disease known as acromegaly, which doctors told Robbins was responsible for his remarkable growth spurts as a teenager, as well as his large hands and feet. (He is 6 feet 7 inches tall, or 201 cm). After consulting with multiple physicians, Robbins decided not to have the adenoma resected, as it was not causing any clinical manifestations."
I find it interesting that he has TWO books with "Giant" in the title - Awaken the Giant Within, and Giant Steps.
On Page 448 of his book, Awaken the Giant Within, he promotes HGH! I cringe because he mentions it under the heading, "The Fountain of Youth."
The book was written in 1992, so I suppose that was before he was diagnosed. Anyway, has anyone ever met him or discussed his acromegaly further? I wonder how his diagnosis has changed his outlook on life and his priorities. I wonder what he was like before he found out about his tumor and what he's like now. I know that my diagnosis was one of the most life altering events in my life.
Would you like to be added to the list of Acromegaly Bloggers or become one of our authors? Send an email introducing yourself or leave a comment on any post with a link to you and your contact info!
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