Recently, the writers at Acromegaly Answers (a Web log owned and operated by Ipsen) spoke with Cory, a 32-year-old man who has had acromegaly for nearly seven years. They spoke about making medication decisions, finding support, and working with doctors and nurses to find the medication that works best for a person with acromegaly.

Diagnosing acromegaly
Many people are diagnosed with acromegaly when they seek treatment for something else. Cory related that he went to the emergency room for a migraine that lasted three days. Physicians discovered a mass on his pituitary gland. The initial evidence suggested that the migraine was caused by either the pituitary tumor or an aneurysm, but more testing was needed. In Cory’s case, he was diagnosed with acromegaly and had an operation (known as a transphenoidal hypophysectomy) two months later to remove all but a small part of the tumor.

Medication following surgery
Surgery for acromegaly is often followed by treatment with medication, especially if hormone levels rise again or fluctuate up and down after removal of the pituitary tumor. Cory told us that he had been prescribed a somatostatin analog (SSA) injection. Like most patients, Cory didn’t ask many questions about his medication. His IGF-1 levels were controlled and he was satisfied with his treatment. At some point during his treatment, Cory’s nurse approached him with the idea of switching to another SSA and gave him a pamphlet. His initial reaction was, “Why switch?”

Making the decision to switch medications
As most patients do, Cory trusted his doctors and nurses. He also reached out to other people with acromegaly, people who had been living with acromegaly for a lot longer than he had. They shared their insights about the different medications and about how to make the decision. After weighing the decision, armed with the insights of other patients and the input from his nurse, Cory switched medications. Since then, Cory has become more involved in working with his doctor and nurse on making decisions that affect his healthcare.

How to make decisions about medications
Cory didn’t think about switching medications, but looking back, he feels that he made the right choice. He’s happy with his treatment. He knows that his health is of utmost importance. And he now realizes the value of keeping up-to-date on new information from his doctor, his nurse, and other patients. Two big things that Cory learned from the experience of switching medications: that a medication that works for some may not work for everyone, and that having an open dialogue with his nurse helped them find a medication that was right for him.

With a chronic condition like acromegaly, it’s important to work with your doctor, your nurse, and other resources for up-to-date information. Also, talk with other people with acromegaly, people who’ve been in your shoes. Until his need for more information, Cory was unaware of the patient support communities available for people with acromegaly. Today he realizes that there is a great value in communicating with other patients, especially when making decisions about medications.

It’s also important to remember that individual results vary. The discussions with his healthcare team, the decision to switch, and the medication that worked for Cory may not work for you.

Note that articles on this blog are written by a contracted writer/editor.

Recently, the writers at Acromegaly Answers (a Web log owned and operated by Ipsen) spoke with Daphne Adelman, a nurse at Northwestern University in Chicago, about comorbidities of acromegaly, what they are, why they occur, and what parts of the body they can affect.

About comorbidities and acromegaly
People with acromegaly wait approximately 4 to 10 years before getting an accurate diagnosis. During those years, their acromegaly is usually untreated. Long-term, untreated acromegaly comes with a higher risk of certain comorbid conditions and serious complications. These conditions can even lead to premature death; people with acromegaly have a 2- to 3-fold higher risk of premature death, generally resulting from cardiovascular, respiratory, and diabetic complications. This is why it is important to diagnose and treat acromegaly as early as possible.

Before diving into the comorbidities of acromegaly, let’s take another look at what causes it: too much growth hormone (GH) and too much insulin-like growth factor-1 (IGF-1). Too much GH is generally the result of a tumor on your pituitary gland. The surplus GH stimulates your liver and other tissues to produce more IGF-1 than your body needs. Together, too much GH and too much IGF-1 cause your organs and bones to grow, even after they should have stopped growing. And when that happens, the diagnosis is acromegaly.

There’s another thing that happens when your body produces too much IGF-1: it causes “comorbidities.” Comorbidity is a medical term that means a condition that happens at the same time as another condition. Comorbidities are not symptoms, which are caused by the disease itself, but conditions that commonly occur alongside the disease, in this case, acromegaly. The comorbidities related to acromegaly can occur throughout your body, affect different systems, and have a serious impact on your organs.

Examples of comorbidities of acromegaly
According to Daphne, too much GH and IGF-1 can affect you in different ways, changing your bones as well as the soft tissues of your body, and resulting in comorbidities, such as:

• Gigantism. If you’re young and your bones are still growing, too much GH and IGF-1 can make your bones continue to grow, causing what is called “gigantism.”
• Arthritis and other joint problems. If your bones have already stopped growing and you have too much GH, it can make the areas around your bones grow, like your cartilage and your joints. Because this growth is uneven and irregular, it can damage your joints, resulting in arthritis and other problems.
• Sleep apnea. As Daphne pointed out earlier, too much GH and IGF-1 can make soft tissue grow, which can create different health problems. If the tissues in your throat enlarge you might have difficulty breathing during sleep. This is a common comorbidity for people with acromegaly, called sleep apnea.
• Misalignment of your jaw and bite problems, widely spaced teeth, swelling of the tongue, or headaches.
• Menstrual problems or infertility.
• Exaggerated growth of your hands and feet.
• Thickened skin or skin tags at various places on your body.
• Excessive sweating, pins-and-needles in your hands and feet, carpal tunnel syndrome in your wrists, or overall joint pain.

Because there are so many comorbidities connected to acromegaly, many different doctors might be the first to notice your symptoms. One clinical study found that almost 40% of acromegaly patients were initially diagnosed by a family doctor, 25% by endocrinologists, 6% by ophthalmologists or optometrists, 5% by dentists, and 5% by neurologists who were looking into headaches.

Acromegaly can affect specific organs

• Cardiovascular problems. Too much GH and IGF-1 can make your heart grow too large and too rigid. Your heart is a powerful muscle that never stops pumping and if the muscle gets too stiff, it can’t pump your blood as well as it should.
• Type 2 diabetes. Your pancreas produces insulin, to help you turn sugar into energy, but too much GH increases your body’s need for insulin. If your pancreas cannot produce more insulin to meet the increased need, you could develop Type 2 diabetes.
• Colon polyps, problems in the gonads, headaches, and strokes.

If you think you have any of these conditions, tell your doctor right away.

Now it’s your turn, Acromegaly Answers blog readers
If you have acromegaly, think you have acromegaly, or care for someone with acromegaly, consider these questions:

• Have you become aware of any comorbidities since you were diagnosed?
• Have you noticed any changes in your sleep patterns?
• Do your shoes and gloves still fit comfortably?
• When you have your teeth cleaned, does the hygienist notice any changes from visit to visit?

Note that articles on this blog are written by a contracted writer/editor. Daphne Adelman received compensation from Ipsen for her time helping to develop this blog post.

Recently, the writers at Acromegaly Answers (a Web log owned and operated by Ipsen) spoke with Daphne Adelman, a nurse at Northwestern University in Chicago, about growth hormone (GH) and insulin-like growth factor-1 (IGF-1) levels, what they are, how you test them, and what happens when there’s too much in your body.

Let’s define our terms: growth hormone and insulin-like growth factor-1

• Growth hormone is a hormone made in the pituitary gland. In addition to signaling the body that it is time to grow, GH stimulates the production of another hormone, insulin-like growth factor-1. This hormone is produced by the liver and other tissues. Both hormones produce growth in the body’s bones, organs, and tissues.
• Insulin-like growth factor-1, as its name implies, is a hormone similar in structure to insulin. IGF-1 plays an important role in childhood growth and continues to have effects in adults. Higher-than-normal amounts of IGF-1 are caused by too much GH in the body, which stimulates the liver and other tissues to produce extra IGF-1.

Testing your levels of GH
Testing your levels of GH to see if there’s too much is typically done with an oral glucose tolerance test (OGTT). An OGTT works like this: you fast for 8-14 hours before the test, usually overnight. When you come in for the test, you give a blood sample. This sample is used to find your “baseline” blood level of GH. Then you drink a glucose (the main body sugar) solution over 5 minutes. You give more blood samples for GH measurements at 30 minutes, 60 minutes, 90 minutes, and 120 minutes after drinking the glucose.

Most patients’ bodies respond to the glucose by suppressing or holding down the GH in their blood to levels so low, they can’t be measured. If you have acromegaly, your GH levels are not suppressed, and may even rise, during a glucose tolerance test.

Normal GH and IGF-1 levels for an adult
According to Daphne Adelman, a nurse at Northwestern University in Chicago, GH levels in adults shouldn’t go above 1 nanogram per milliliter (>1ng/mL) of blood, and IGF-1 should stay below about 300 nanograms per milliliter. She also made the point that the normal range varies from assay to assay. (An assay is a blood test done to determine the presence and amount of GH in your bloodstream. Different assays use different methods to test and have different normal ranges.)

Now, 300 nanograms-per-milliliter doesn’t sound like much, but GH and IGF-1 are powerful chemicals at work in your body. Age also plays a role in testing. IGF-1 levels vary with age, declining as you get older. What might be a normal level of IGF-I in your 20’s could be considered too high in your 40’s or 50’s.

When there is too much IGF-1, acromegaly occurs
Too much IGF-1 is usually caused by too much growth hormone, which is generally the result of a tumor on your pituitary gland. The surplus GH stimulates your liver and other tissues to produce more IGF-1 than your body needs. Together, too much GH and too much IGF-1 cause your organs and bones to grow, even after they should have stopped, and when that happens, the diagnosis is acromegaly.

There are treatment options if you have a diagnosis of acromegaly
Currently, surgery to remove the tumor on your pituitary gland is the first treatment recommended for patients with acromegaly.

Beyond surgery (or instead of surgery, if you’re not a good candidate for surgery), another option is treatment with medicine. Over the last 20 years, very selective medicines called somatostatin analogs, or SSAs, have been developed. SSAs lower GH and IGF-1 levels for a lot of patients with active acromegaly. An SSA is typically prescribed after surgery if the operation doesn’t bring down your GH and IGF-I levels. Your doctor might also prescribe an SSA as the first treatment for you if you prefer not to have surgery, if you’re too ill to have surgery, or if your tumor is inoperable.

Radiation aimed at the tumor is sometimes used to treat acromegaly. SSAs are also used after radiation therapy, which can take a long time to be effective. During that long period, an SSA might be prescribed to bring down your GH and IGF-1 levels.

A test every year for IGF-1 levels is a necessity
As a nurse who sees acromegaly patients, Daphne Adelman makes the point that acromegaly is a chronic condition and routine testing is necessary to make sure that your treatment is working. She advised meeting with your doctor once or twice a year. If your GH and IGF-1 levels are going up or fluctuating up and down, you should see your doctor more often. You need to make sure that your medication is adjusted properly.

After getting a diagnosis and finding the right treatment for acromegaly, you might feel better, and think about skipping your annual blood test, but don’t do it. There is always the chance that your medication stopped working, or a tumor started growing back. As Daphne reminds us, without regular testing, you might not know it; annual testing is the best way to catch things like that.

While we’re talking about skipping, if your medication’s working and you’re feeling better, you might also think about skipping doses of your medication. Once again, don’t do it. If you’re feeling better, it’s probably because your GH and IGF-1 levels are under control. Keeping them under control means taking your medication as directed by your doctor.

Now it’s your turn, Acromegaly Answers blog readers
If you have acromegaly, think you have acromegaly, or care for someone with acromegaly, consider these questions:

Note that articles on this blog are written by a contracted writer/editor. Daphne Adelman received compensation for her time helping to develop this blog post from Ipsen. ]]> http://www.acromegalyanswersblog.com/index.php/2010/01/13/understanding-gh-and-igf-1-levels/feed/ http://www.acromegalyanswersblog.com/index.php/2009/12/02/clear-the-path-life-is-waiting/ http://www.acromegalyanswersblog.com/index.php/2009/12/02/clear-the-path-life-is-waiting/#comments Wed, 02 Dec 2009 15:00:56 +0000 AcromegalyAnswersBlog http://www.acromegalyanswersblog.com/?p=214 By Wayne N. Brown, Acromegalic Patient

I had a very interesting weekend dealing with friends and their psychological limitations.  Now I am in no way a psychologist, or even a social worker.  But as a fellow acromegalic and high school teacher, I feel I am somewhat of an expert in how people can be cruel to those who look “different.”

One friend was acromegalic, and one was completely healthy.  My friend who was acromegalic was invited to a party where they had not seen people since before their diagnosis.  My friend who is in perfect health was afraid to attend a gym because they may not be as strong as their contemporaries.  While these people are on different life paths, the similarities in their reasoning were striking to me.  Both friends were primarily worried about what other people would say if they chose to participate in their individual social activities.  While I am sympathetic to their fears, my own experiences made me feel badly that they were voluntarily standing in their own way.

 Before I was diagnosed with acromegaly, I was tremendously obese, I was 6’3” and weighing in at just under 350 pounds.  My shoes were size 16, and my hands BARELY fit into XXXXXL gloves!  As to the gym, when I did try to go to the gym, I was barely able to do anything without my chest hurting.  In hindsight, it was probably the tumor, but at the time I heard the whispers when I couldn’t hack it at the gym(which may or may not have been limited to my own brain): how do I expect to get my heart healthy if I don’t exercise because its too tiring.  What a loop!  If I go to the gym, I feel lousy and fear people are ridiculing my workout ability.  If I don’t go to the gym, I feel lousy and fear that people are ridiculing my weight.

 After diagnosis and treatment, I lost a good deal of weight for about six months before it started creeping back up.  I was at a crossroads.  I didn’t want to gain the weight back, but how I feared what others were saying.  So I started to just watch my diet.  Eventually that weight loss plateaued and I needed to either accept where I was stuck, or risk ridicule.  I finally decided to take the plunge, laughing be damned.  While I felt like everybody was looking and laughing at me, eventually I noticed that most people were busy working out, with no regard to anyone else in the gym.  Most people there were either they were in love with their own look, or were worried about the same thing I was: ridicule from fellow members.  After that epiphany, I was able to go work out at my own pace without fear of ridicule.  And yes, I did see people laughing at me from time to time, but by then I was far enough into my routine that I just didn’t care.  Parenthetically, this morning I was at the gym and noticed a guy doing cardio who was tremendously overweight.  My first thought was, good for him!  He took the first step!

 So what does all this have to do with Acromegaly?  Acro’s are typically very self-conscious of how we look.  “Chris” chose not to go to the party because of a fear of ridicule.  This is a shame because Chris is a very kind and generous person and I am sure that the party was poorer for Chris’ absence.  Moreover, I am confident everyone else going to the party was afraid of something embarrassing including (choose any or all): weight loss/gain, job/career status, clothing label, paycheck, kids, house, life goal, addictions, fears, etc.  We don’t need to apologize for our own inadequacies because most people are too busy focusing on their own shortcomings to notice what we fear most about ourselves.

 My friends, I am both happy and sad to announce that no one ever really leaves behind the pettiness of high school.  It is sadly unavoidable that people will always judge other people; and I am sure that at one time or another we are all guilty of it.  The trick is to not let other people’s value of you paralyze your life.  When we choose to not be social because of fears over that which we cannot control, we stay home and trap ourselves inside our own brains with our own endless chants of inadequacy, ensuring those negatively skewed self-evaluations will set in mental concrete.  We have an obligation to those we love, and those who love us, to battle those insecurities and live every moment to the best of our abilities.

 I admit that some days are better than others and when the acro is running your body, it can be tough to face the world.  On sick days you may need to take it easy, and that is fine.  But on those other days when we are healthy but may be feeling a little crummy about ourselves, I feel that those are the days we need to work extra hard to face the world.  Worst-case scenario, we go out and have just as bad a time as we feared we would.  But in all likelihood, if you are social, something good will happen while you are out.  Even just faking it can change your mood for the better… you will have far more fun than locking yourself in the house.  Who knows, maybe you go out and have a wonderful time and make new wonderful memories.

 We only have one shot at this life.  We need to make sure that we do waste a single day because of a fear that someone you don’t know may disapprove of you.  Go have a great life, and if someone tries to stand in your way, walk around them and keep going!

Acromegaly brings change, not just physically but in your whole life. In making these changes, you can design the life you want to live. Find meaning and purpose in what interests you and makes you feel useful. Reassess what makes you feel worthwhile, connected to others, and good about yourself. And always, take good care of yourself.

Some ways to take good care of yourself include:

· Face feelings

· Reduce stress

· Maintain proper diet and exercise

· Get adequate rest and relaxation

· Alter your environment to suit you

· Manage your time and energy

· Communicate your needs

· Identify sources of strength (people, activities, solitude, nature, etc.)

· Distract yourself when stress mounts

· Stay connected to what’s enjoyable and meaningful

The problems of daily life can cause anger. This is a healthy, rational response. Aim for solutions, and take pride in giving it your best effort, even if you cannot solve the problem. Strategies to help you do this include:

· Strike when the iron is cool. Don’t let anger to get away from you. Take time, cool down, communicate logically and accurately, and think before you respond. You can say something later, but you can’t “unsay it.” Better communication will improve relationships and bolster your self esteem.

· Simple relaxation strategies. Deep breathing, visualizing relaxing experiences, yoga, and meditation can calm you down when anger strikes.

· Be realistic and accurate. Avoid saying “never” and “always.” They fuel your anger and alienate others. This puts them on the defensive when you could ask their help in solving your problem.

· Change the way you talk to yourself. Anger exaggerates emotions. Instead of thinking, “Oh, this is horrible, all is lost,” think, “This is inconvenient, but not the end of the world.”

· Logic defeats anger. Tell yourself the world is not against you; you hit a bump on the road of life. Instead of demanding things, ask for them. Rather than say, “I must have this,” say, “I would like this.” Even if don’t get what you want, things will be smoother.

· Listen to what others are saying. Respond to the feelings they’re expressing. If you can rephrase a demand for something (think of a spouse’s demand for more time as a desire to be closer), you can dissolve anger.

· Use humor to defuse the situation. Remind yourself that what angers you is not the end of the world. But don’t use humor to mask sarcasm or hostility.

· Change what you can in your environment. If certain times of day are stressful, build in relief or relaxation. Avoid discussions of volatile conflicts if you’re spread thin. If certain things upset you, see if you can avoid them, or find alternatives that help you stay calm.

Taking an active role in solving problems is essential to dealing with acromegaly. If you have acromegaly, problem-solving means taking charge, anticipating potential challenges, and working around them.

Anticipate a problem and solve it in advance. If you can identify a potentially embarrassing social situation or remark, you can plan what to say or how to handle it in beforehand. By doing this, you can regain a sense of confidence, competence, and control. You can overcome the worry that, “I can’t handle it if ____ happens.” By developing solutions in advance, you can face down tough situations with increased comfort.

Active or passive problem-solving. Many factors influence your ability to cope with acromegaly (personality traits, family support, education, social status), but the biggest is whether you take an active or a passive approach to solving problems. Illness means giving up control of certain parts of your life, but with acromegaly you have to find new ways to regain control, such as:

· Cognitive restructuring. Change the way you talk to yourself. Believe that you can solve your problems.

o Remind yourself to be realistic. Rather than thinking, “This is the end of the world,” think, “In this situation, I can do this.”

o Avoid “all-or-nothing” scenarios. Don’t think, “If I don’t do everything perfectly, I’ll fail,” think, “I have strengths I can use to solve this problem.”

· Active problem-solving. Competence and control are the best antidotes to fear and anxiety. Key aspects of active problem-solving include:

o Knowledge and information. Learn about acromegaly so you can participate in your care and make decisions about available options.

o Planning. Anticipate hurdles and ways to minimize problems. Know your triggers (things that make you feel hurt or angry) and plan around them.

o Set realistic goals. Take small steps in the right direction. Believe that you will reach your goals.

o Flexibility. If your first try doesn’t work, reassess your situation, adjust your approach, and try again.

o Humor. Maintain your sense of humor. It helps a lot.

o Redefine your self-worth as needed. For example, if “appearance” was high on your list of defining factors, identify other things to like about yourself. Look at it this way: at your funeral, no one will talk about your ring size or tooth gaps; they will talk about how you lived your life and what you meant to others.

Active problem solving means facing issues. Avoidance only fosters fear and anxiety. Studies show that dealing with illness can help you reassess priorities, get a better sense of yourself, and even help you find greater meaning and purpose in life.

Let’s talk about regaining a sense of normalcy after getting a diagnosis of acromegaly. Before we do, however, we should talk about emotional issues you might face. Try to understand these emotional issues as your best efforts to cope with the fears and anxieties of diagnosis, at least for right now.

The biggest emotional hurdles you’ll face are anger, depression, and irritability. Just getting a diagnosis is an anxiety-provoking event. It comes with fears about pain, finances, job performance, body changes, and relationship issues, in addition to fear of potential neurosurgery. People often respond to a diagnosis with social isolation and withdrawal, loss of libido, and lowered self-esteem. They develop regressive behaviors (being needy and childlike) and displacement (taking out frustration on others, typically loved ones who will absorb it safely).

Every illness is a loss, and acromegaly is life-changing. Your “loss” can be your pre-diagnosis self-image, your sense of self-mastery, or your “old” face/hands/feet. You might feel you’ve lost your perfect health or your feeling of invincibility (“this will never happen to me”).

Grief is a natural response to loss, and everyone grieves in his or her own way. You might not go through every stage of grief, nor do you have to experience each stage. There is no linear path; stages overlap, and you may go back and forth among them. That said, grieving your loss may involve:

·         Resignation: “I give up. I have no control over my life anymore.”

·         Denial: “This can’t be happening to me!”

·         Anger: “Why me? What or who can I blame?”

·         Bargaining: “Make it not so, and I’ll do anything.”

·         Depression: “I’m too sad to do anything.” (may include resignation)

·         Acceptance & Adaptation: “I can deal with this by taking control in this way.”

You can absolutely reclaim a level of normalcy. If you have acromegaly, you have to work at problem-solving (more on that in another blog). Typically, acromegaly affects not only your body, but also your self-image and overall well being. Acknowledge the powerful psychological impact and then adapt to your new situation.

Psychological normalcy means taking control of your life, making educated and informed decisions, and adapting to physical and emotional changes. It means redefining priorities, processing what you’ve lost, making room for new gains, and staying connected to what gives you joy. It sounds hard, but it’s true: you can find value and meaning in life, even with acromegaly.

To get on the path to “normal,” your acceptance—and taking control through active problem-solving—are essential. And in the process, you might find strengths you never knew you had. For example, by refocusing on what’s really important in relationships, you may become a better friend, partner, parent, employee, neighbor, etc. Being forced to redefine priorities can mean discovering a life that’s more meaningful, rich, and successful, all on your own terms.

Assistant Professor of Medicine, Division of Endocrinology, OSU Comprehensive Cancer Center, James Cancer Hospital and Solove Research Institute

Hi, I’m Dr. Joe Pinzone, and I’m an endocrinologist with experience in treating patients with acromegaly. I’m here to talk to you about medical treatment for acromegaly.

First, let’s talk about goals. The main goal of acromegaly treatment is to lower your levels of growth hormone or GH, and another hormone, insulin-like growth factor-1, also known as IGF-1.

One way to lower GH and IGF-1 levels is medication. While surgery and radiation may be parts of your treatment plan, medication is also effective, including the latest generation of somatostatin analogs. These are very selective drugs to help control GH and IGF-1 levels. Let’s look at the types of drugs you might take for acromegaly, what they do, and what side effects they might have:

• Somatostatin analogs mimic somatostatin, a substance your body uses to keep GH and IGF-1 levels in the normal range. Analogs can replace missing somatostatin. They may shrink tumors before surgery, making them easier to remove.
• Growth hormone receptor antagonists (GHRAs) block the action of GH on cells in your body, stopping production of IGF-1.
• Dopamine agonists help reduce tumor size and IGF-1 levels. They are most helpful for tumors secreting a hormone called prolactin.

Another treatment is surgery. Since tumors cause most cases of acromegaly, removing the tumor should reduce the amounts of GH and IGF-1 to normal levels. Another way is radiation. This is usually done if you can’t have surgery, and sometimes after surgery. Radiation can lower GH to normal levels, but it takes a long time.

Your physician may combine some of the treatments discussed here. Have a two-way discussion with your doctor if you take one or more medications. Be sure to share any medications prescribed by one doctor with all of your doctors. Know the side effects you are prone to. And find out if any of your treatments interact with one another.

I’ve shared, now it’s your turn. If you had surgery or radiation, prior to the procedure, how did you prepare? What info do you wish you had gotten prior to it?

]]> http://www.acromegalyanswersblog.com/index.php/2009/09/30/medical-treatment-for-acromegaly-has-come-a-long-way/feed/ http://www.acromegalyanswersblog.com/index.php/2009/09/16/are-you-alone-no/ http://www.acromegalyanswersblog.com/index.php/2009/09/16/are-you-alone-no/#comments Wed, 16 Sep 2009 15:00:08 +0000 AcromegalyAnswersBlog http://www.acromegalyanswersblog.com/?p=187 By: Wayne Brown, an Acromegalic Patient.

So you have been diagnosed with Acromegaly.  If you are anything like I was, a small amount of congratulations is deserved.  I know that I was complaining for almost ten years about how lousy I felt, and finally being diagnosed offered a certain modicum of relief.  However, if you were more like me your next question was, what the hell is that?!

Welcome to one of the largest tiny groups in the world.  There are no stickers, no fundraiser cut outs of scrap paper sold at fast food restaurants, no ribbons, and most critically no personal support groups to help you after diagnosis.  Most acromegalics could go their entire lives without ever bumping into another soul who can empathize with what you are feeling.  That was the worst part for me.  One night I was sitting alone in the darkness, trapped with my thoughts.  Am I really alone with this?  Are the medication side effects normal?  Why do I still have days when I’m tired?  How do I explain to a date that I have a tumor in my head?  And of course, the ultimate… am I going to die?  When I was diagnosed, I had a number of family members dealing with ‘high profile’ diseases, so I felt guilty if I ever complained that I felt horribly.  So what is a person to do?  Well I decided to look for support.  I started by going to a support group for people with brain tumors.  While everyone was very nice, it was very clear that this was not a good fit since everyone else had cancer.  When I looked for groups that helped people with just ‘average’ tumors, I found none.  So I decided to do the next-best thing and lift the metaphorical window to scream out at the rest of the world.  “Hey, is there anybody out there?”  While it took a while for anyone to answer back, it did happen.  And now I am proud to have friends around the world.

And where can you scream that the whole world can hear you?  Well the internet of course!  While acromegaly is an ‘orphan’ disease, there are still a number of us orphans all over the world, and we’ve been able to find one another online.

Acromegaly can be a very lonely illness.  I know this beyond a shadow of a doubt.  But the thing about loneliness is that you can minimize that feeling if you can introduce yourself to people who are experiencing similar issues.  While it would be nice to feel the warm embrace of another acromegalic, you may be the only one in your town.  Then again, you might not.  But the odds of actually meeting someone else is probably small.

The bottom line is that you are not alone if you choose not to be.  I love our gang.  I know for certain that our friends span at least three different continents, and dozens of different countries.  But what really makes everyone so great is that we all come from our own backgrounds and experiences, but we all have that one same horrible thing in common.

So I would like to welcome you to our community.  Everyone is welcome.  I would love to hear your feedback.  What do you like?  What would you like to know?

]]> http://www.acromegalyanswersblog.com/index.php/2009/09/16/are-you-alone-no/feed/ http://www.acromegalyanswersblog.com/index.php/2009/08/12/181/ http://www.acromegalyanswersblog.com/index.php/2009/08/12/181/#comments Wed, 12 Aug 2009 15:10:54 +0000 AcromegalyAnswersBlog http://www.acromegalyanswersblog.com/index.php/2009/08/12/181/ On June 23, a personal story about Tanya Angus, a 30-year-old woman with acromegaly, was viewed by millions of viewers who tuned into the Today Show.

The Today Show airing, found here, was featured on MSNBC.com, in addition to other news and blog sites. Many in the acromegaly community have posted comments, noting how Tanya’s story has helped raise awareness about the disease.

With recent attention on acromegaly, what are your thoughts about the information presented by the media? Greater awareness of accurate information about acromegaly will enable doctors to recognize the signs and symptoms even sooner, leading to quicker diagnosis and treatment.

Tell us, what did you think of the TODAY Show’s depiction of acromegaly? What would you say if you had an opportunity to publicly share your acromegaly story?