I've always wondered if I should say something to strangers I see that exhibit signs of acromegaly. I have never actually said anything because I worry it might come across as rude, or it might be unnecessarily alarming, but this article is giving me second thoughts about holding my tongue:
http://www.guardian.co.uk/world/2009/oct/28/spanish-women-guardian-angel-disease
I'm curious, have any of you ever been approached by a stranger about your acromegaly, or have you ever approached a stranger (or friend or loved one, even) that you've suspected to have acromegaly? If so, how does one go about bringing it up?
Thursday, November 19, 2009
Friday, November 6, 2009
What Helps? (Part 2)
Remember the post a few months ago about little tips to help deal with acromegaly? I want to highlight a few tips that have come up since the original post.
1) One thing that seems to help ALL the symptoms is to AVOID STRESS. Everyone agrees that we should avoid stress, but how? Everyone has their own way to deal with it, and some are more constructive than others. Prayer, meditation, exercise, stretching, massage, proper sleep, therapy, change of environment, whatever works for you- just don't let stress build up! Stress has a real effect on your body, just like toxins from the environment do. I'm convinced there is a link between stress and acromegaly.
2) Become an advocate. Sometimes when I'm feeling down and a little sorry for myself, I find the best thing I can do to pull myself out the rut is to think of a way to help others (for example, I hope this blog helps others). You can share your experience, educate those around you, raise awareness, and provide support for others that are in need. I feel so much better if I can help just one person avoid unnecessary suffering. I firmly believe that discoveries about acromegaly are going to come from within our community, as a direct result of our own activities. Because our disease is so rare, we can't rely on the rest of the world to fix things for us. We have to work to make things better ourselves!
3) FIND FRIENDS. I don't know where I'd be right now without the support and insight of my fellow acromegaly bloggers. I still remember the first time I "met" someone with acromegaly (it was Jason, via email), and what a thrill it was to stop feeling alone, and to have my experience validated. I recently got to know someone locally with a chronic rare disease, and while his disease is not the same as acromegaly, we were able to share our experiences and give each other tips and encouragement (actually, talking to him is what inspired this post). Having someone who truly understands (not just imagines what it must be like) makes such a difference. If you haven't yet checked out some of the support groups (see the sidebar to the right), you should!
Monday, November 2, 2009
Clinical Trial Reject
I just got of the phone with my endocrinologist- my bloodwork from last week came in and my IGF-1 and Growth Hormone levels are too high for me to qualify for the clinical trial. I have to admit, I'm pretty disappointed. I was really excited about trying out the new treatment, because I really thought it would make my life so much better - I would almost be like a normal person, because I wouldn't have to think about my disease so often. Both the endo and I knew that the current treatment (30 mg Sandostatin, 1/4 weeks) wasn't quite cutting it, but I was hopeful that the experimental thing would work better. Now I don't even have the opportunity to try it out.The morning I went to go in for my blood draw, I was running late, I had just finished working over a really stressful weekend, and I went to the wrong room in the hospital and couldn't find the nurse I was supposed to meet. I wonder if all of that stress elevated my IGF-1 and Growth Hormone levels.
Wednesday, October 28, 2009
Acromegaly, Aging, and Loss
I was reading one of my favorite advice columns the other day, "Since you asked," when I found a letter that struck a resonant chord with me. The letter was written by someone who is concerned about turning 50, facing a rare disease, and basically realizing that he's not 20 anymore. I'm not that close to being 50 years old, but reading the letter reminded me of dealing with acromegaly because for me it has represented the loss of a more carefree and energetic time.
I'm never sure if I'm feeling a certain way (tired, achy joints) just because of the natural aging process, or if it's a symptom of acromegaly. I think about the misinformed people who abuse human growth hormone hoping it will act as a fountain of youth and I shake my head because for me I feel like it has only aged me.
I don't want to give away the whole article, but the advice columnist wrote, "You also sound like you are grieving for your youth," which really struck home. When I get sad about acromegaly, I am grieving for the life I had before acromegaly.
Anyway, I don't always feel like this, but it certainly captured the essence of what I think about when I'm feeling down. I loved the columnist's advice, but I was wondering if you, my fellow acromegaly compadres, had any advice of your own for facing similar times. Please let me know what you think!
http://www.salon.com/life/since_you_asked/2009/10/06/turning_50/index.html
http://www.salon.com/life/since_you_asked/2009/10/06/turning_50/index.html
Wednesday, October 14, 2009
"There is a clear need for better treatments for this niche and difficult to treat disease"
Here's a little ray of hope for those of us who are interested in new treatments becoming available - there's a new drug being developed called ATL1103 that just passed some level of development, and will probably start a human clinical trial in 2010. Sounds promising!
ATL1103 is a second-generation antisense drug that targets the growth hormone receptor (GHR). By blocking the action of GHR, ATL1103 inhibits production of insulin-like growth factor -1 (IGF-I) from the liver thereby reducing its levels in the blood. GHR is a clinically validated therapeutic target in the growth disorder acromegaly (excessive growth of parts of the body and organs including the liver, kidney and heart) where the goal of treatment is to normalise IGF-1 levels in the blood. There is a clear need for better treatments for this niche and difficult to treat disease with the size of this market nearing US$1Billion per annum in drug sales.-From some press release, via the RSS news feed "Acromegaly News" in the sidebar
Friday, October 2, 2009
Getting There—to the End of My Journey—This Time Around
Please see my new post on my recent transphenoidal surgery to remove a residual pituitary tumor. I initially posted it here but thought it wiser to just share this link: http://acromegalicprincess.blogspot.com/2009/10/getting-thereto-end-of-my-journeythis.html. Thanks. There is a cure for acromegaly as excision of the adenoma can result in remission for some of us. God bless us all.
Tuesday, September 22, 2009
Happiness and Acromegaly
This was a piece written by Ayaka, one of my friends in the Acromegaly Community family.
People around me often say, “You’re always smiling and looking really happy.” In fact, I always try to think about good things, so that must be why I smile all the time. Not only that, I also think it is wonderful for me to just being in this world alive and to live a normal life, so I feel quite happy. However, my smile is possibly a byproduct of my so-called “intractable disease” in Japanese medical system. My smile is my greatest strength. By smiling, I am also trying to repay the kindness of people who have supported me in so many ways, and if possible, I wish I can give people some hope through my smile.
My disease is a chronic illness, called “acromegaly.” Acromegaly is incurable. It is not associated with lifestyle, and the cause of this disease is unknown. Approximately 4-6 out of 1 million are diagnosed with this disease each year, so it is a very rare disease.
Acromegaly is a medical condition where you have too much growth hormone in your body. It is due to a growth hormone producing tumor on your pituitary, which is located under the hypothalamus. I had a tumor, measured about 7cm on my pituitary. I was twenty-four when I was diagnosed. This big tumor compressed my optic nerves, so I lost peripheral vision. The first surgery of my life was a neurosurgery.
At that point, I had not yet experienced any serious illness, so I did not know that the surgery was merely the beginning of the life with a medical condition. The surgery itself was a great success, but my life after the operation became pretty difficult.
At first, I absolutely hated needles, and I was scared of and hated the monthly blood tests and intramuscular injections. Particularly, the needle for the IM injection was 19 gauze and 1.5 inches long (about 3.81cm). I would felt, “I can’t stand the injections with such a big needle every single month for rest of my life. It’s impossible…” The side-effects of this medication include but not limited to the pain from the injection, fatigue, abdominal pain, diarrhea, anorexia (loss of appetite), depression, light-headedness, and headache. What is more, one dose of this medication costs ¥60,000-70,000 JPN (approximately $600-700 USD). I need to receive one dose each month. In other words, my monthly medical expense is at least ¥60,000-70,000. “I can’t believe the shot is painful, side-effects are bad, and it is so expensive! How can I seriously live with this disease?” I questioned the necessity of this medication because of all the downside of it, but I found that I would die by ten years earlier if I would not receive the medication. In addition, I was most likely to get complications, such as colon cancer, cardiomegaly, or partial blindness. To prevent these things, I need to get the expensive, painful, and harsh injections.
Complications of acromegaly are many. In my case, some of the complications are pre-diabetes, chronic headache, chronic fatigue, and goiter. As you can see, none of these medical conditions are visible. It’s hard to have just one of these conditions, but if you have all of them, it is even harder. I can still live normally with all these conditions, like my doctors say. However, few people know that being “normal” is more challenging than it seems, so I often feel that I am not understood.
Have you ever felt profoundly tired when you caught bad cold? Chronic fatigue is like you feel that way all the time. Have you ever had a bad hangover headache? My headache comes twice or three times a month usually, and I cannot even stay awake with the pain. Imagine living in such body every single day. For me, living “normally” itself can be hard. Even so, fortunately or unfortunately, I look completely normal, so not many people understand how I really feel. Just to note, however, that not all the people with acromegaly have exactly the same symptoms that I have. Some patients can enjoy intense sports while the other cannot walk easily with a lot of complications.
I have now talked about the challenge to live with acromegaly, but it is not only hardships that I have experienced while I live with multiple chronic illnesses. It is true that I need to deal with a lot of difficulties that I would not have to deal with if I were strong and healthy. Sometimes, I do feel very discouraged, but it does not mean that I feel unhappy. I have gained a lot of important things through my illnesses, and I even feel blessed quite often. First, I became someone who can feel others’ pain. Second, I met a lot of wonderful people through my medical conditions, I was touched by their kindness, and I made precious friends who are very supportive and understanding.
Third, I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful. I had known this in head, but I had not understood by heart until the diagnosis. Now, I started thinking about our happiness all the time. If we cannot feel happy in this limited time, how vain our lives are? When I question myself like this, I became more positive, and made up my mind: “I must become happy no matter what medical conditions I have. I’m the one who’s in charge of making myself happy and cheerful.”
Although I am trying to maintain positive attitude, I sometimes feel depressed. Now and then, I cursed my life, or I thought I would rather die. Each time I was in such a negative mood, however, I thought of all the people who have saved my life and supported me all the way, and I felt warm in my heart. I do not want to give up living so easily, but rather, I want to live as hard as possible with my doctors, family, friends, peers, and their love and support. I think I went to the lowest point, feeling hopeless, and because of that experience, I became much stronger. My smile is the symbol of my strength.
I came this far, but until I made my way up here, there were a lot of hardships, and I am still in this battle. Although I continue facing challenges after challenges, I decided not to lose hopes. I am supported by many people, including my primary physician, Prof. Hizuka at Tokyo Women’s Medical University Hospital / Endocrinology Center. I want to repay all the kindness that they gave me when I needed the most, but it is just too tremendous. I finally came to the conclusion that what I can do to repay is my smile/happiness, and to pass on their good deeds to others. I may not be able to smile like I am now if I did not have to live with chronic medical conditions, so I am convinced that my whole experience with acromegaly is a blessing. I want to give some hopes to as many people as possible through my smile. This is my greatest wish for now, and I do believe it is one of the most important works I can do.
People around me often say, “You’re always smiling and looking really happy.” In fact, I always try to think about good things, so that must be why I smile all the time. Not only that, I also think it is wonderful for me to just being in this world alive and to live a normal life, so I feel quite happy. However, my smile is possibly a byproduct of my so-called “intractable disease” in Japanese medical system. My smile is my greatest strength. By smiling, I am also trying to repay the kindness of people who have supported me in so many ways, and if possible, I wish I can give people some hope through my smile.
My disease is a chronic illness, called “acromegaly.” Acromegaly is incurable. It is not associated with lifestyle, and the cause of this disease is unknown. Approximately 4-6 out of 1 million are diagnosed with this disease each year, so it is a very rare disease.
Acromegaly is a medical condition where you have too much growth hormone in your body. It is due to a growth hormone producing tumor on your pituitary, which is located under the hypothalamus. I had a tumor, measured about 7cm on my pituitary. I was twenty-four when I was diagnosed. This big tumor compressed my optic nerves, so I lost peripheral vision. The first surgery of my life was a neurosurgery.
At that point, I had not yet experienced any serious illness, so I did not know that the surgery was merely the beginning of the life with a medical condition. The surgery itself was a great success, but my life after the operation became pretty difficult.
At first, I absolutely hated needles, and I was scared of and hated the monthly blood tests and intramuscular injections. Particularly, the needle for the IM injection was 19 gauze and 1.5 inches long (about 3.81cm). I would felt, “I can’t stand the injections with such a big needle every single month for rest of my life. It’s impossible…” The side-effects of this medication include but not limited to the pain from the injection, fatigue, abdominal pain, diarrhea, anorexia (loss of appetite), depression, light-headedness, and headache. What is more, one dose of this medication costs ¥60,000-70,000 JPN (approximately $600-700 USD). I need to receive one dose each month. In other words, my monthly medical expense is at least ¥60,000-70,000. “I can’t believe the shot is painful, side-effects are bad, and it is so expensive! How can I seriously live with this disease?” I questioned the necessity of this medication because of all the downside of it, but I found that I would die by ten years earlier if I would not receive the medication. In addition, I was most likely to get complications, such as colon cancer, cardiomegaly, or partial blindness. To prevent these things, I need to get the expensive, painful, and harsh injections.
Complications of acromegaly are many. In my case, some of the complications are pre-diabetes, chronic headache, chronic fatigue, and goiter. As you can see, none of these medical conditions are visible. It’s hard to have just one of these conditions, but if you have all of them, it is even harder. I can still live normally with all these conditions, like my doctors say. However, few people know that being “normal” is more challenging than it seems, so I often feel that I am not understood.
Have you ever felt profoundly tired when you caught bad cold? Chronic fatigue is like you feel that way all the time. Have you ever had a bad hangover headache? My headache comes twice or three times a month usually, and I cannot even stay awake with the pain. Imagine living in such body every single day. For me, living “normally” itself can be hard. Even so, fortunately or unfortunately, I look completely normal, so not many people understand how I really feel. Just to note, however, that not all the people with acromegaly have exactly the same symptoms that I have. Some patients can enjoy intense sports while the other cannot walk easily with a lot of complications.
I have now talked about the challenge to live with acromegaly, but it is not only hardships that I have experienced while I live with multiple chronic illnesses. It is true that I need to deal with a lot of difficulties that I would not have to deal with if I were strong and healthy. Sometimes, I do feel very discouraged, but it does not mean that I feel unhappy. I have gained a lot of important things through my illnesses, and I even feel blessed quite often. First, I became someone who can feel others’ pain. Second, I met a lot of wonderful people through my medical conditions, I was touched by their kindness, and I made precious friends who are very supportive and understanding.
Third, I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful. I had known this in head, but I had not understood by heart until the diagnosis. Now, I started thinking about our happiness all the time. If we cannot feel happy in this limited time, how vain our lives are? When I question myself like this, I became more positive, and made up my mind: “I must become happy no matter what medical conditions I have. I’m the one who’s in charge of making myself happy and cheerful.”
Although I am trying to maintain positive attitude, I sometimes feel depressed. Now and then, I cursed my life, or I thought I would rather die. Each time I was in such a negative mood, however, I thought of all the people who have saved my life and supported me all the way, and I felt warm in my heart. I do not want to give up living so easily, but rather, I want to live as hard as possible with my doctors, family, friends, peers, and their love and support. I think I went to the lowest point, feeling hopeless, and because of that experience, I became much stronger. My smile is the symbol of my strength.
I came this far, but until I made my way up here, there were a lot of hardships, and I am still in this battle. Although I continue facing challenges after challenges, I decided not to lose hopes. I am supported by many people, including my primary physician, Prof. Hizuka at Tokyo Women’s Medical University Hospital / Endocrinology Center. I want to repay all the kindness that they gave me when I needed the most, but it is just too tremendous. I finally came to the conclusion that what I can do to repay is my smile/happiness, and to pass on their good deeds to others. I may not be able to smile like I am now if I did not have to live with chronic medical conditions, so I am convinced that my whole experience with acromegaly is a blessing. I want to give some hopes to as many people as possible through my smile. This is my greatest wish for now, and I do believe it is one of the most important works I can do.
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