Longevity with Quality of Life: 60 Years on the Road and More to Goby Carl Vitaliti (collaborative effort) IntroductionWhat started out as a simple question and answer piece for the TAG Newsletter on my turning 60 evolved into an extended exploration of my life and self. Many of the questions gave me pause to think and reflect on my life events. I did not expect certain questions. As I reread many of the questions and answers, I began to see in myself many things that are not as evident as I once thought. I suggest all thalassemia patients ask themselves these same questions and write down the answers. See what roads your exploration takes you on. As you later read your responses, you may see a different person when you look in the mirror.Q1) How old were you when you were diagnosed? What is your diagnosis, major or intermedia? When you were diagnosed, were you put on regular transfusions?A) My pediatrician diagnosed me with “Mediterranean anemia” shortly after birth, and I only had a few transfusions as a child. My diagnosis depends on which doctor you ask. Dr. Miller from the NIH put it simply: If you need to be transfused to stay alive, it is considered thal major. Since I have been classified as both, I tell people I am intermedia/major. I always maintained a low red cell count as a child and into my teen years. I had an enlarged spleen all my life till it malfunctioned and was removed in my late 20s. Growing up, my activities (especially sports) were very limited due to the low red cell count (and spleen), but I learned to live with it, and my body adjusted to it. After my spleen (about 12 pounds) and gall bladder were removed, I saw a drastic change in my energy level. It dropped like a lead balloon. Just about then, the NIH was doing trials on Desferal (which I participated in), and I began what I call my transfusion era. This was about 1979. At that time, my liver iron levels were in the 8,000-plus range. In those years, the NIH would transfuse me and supply me with Desferal. (I did not have adequate insurance coverage for either.) After that, I learned about the Cooley’s Anemia Foundation and made some initial contacts, but nothing really came of it. TAG was just coming onto the scene in that era and I went to two of the conferences. I was in my 30s then, and the members of the TAG Board were all younger than me. I felt so out of place. It was not till I was in my mid-40s (I guess), that I hooked up with some patients in the Washington, D.C., area who contacted me through CAF. Shortly thereafter, D.C., Maryland, and Virginia became a chapter, and that’s when I finally got involved with CAF and TAG.Q2) What is your current medical regiment? When did you start chelation? What chelation therapy are you on? How often do you go for transfusions? How often does your hemoglobin drop below 8?A) The answers are a bit complex, since I have multiple medical conditions. I am on Desferal, 2,500 units per day, five times a week (when I am fully compliant). I just could not adjust to Exjade. I infuse through a port. I see my hematologist/oncologist every 30 days and get blood counts. When I drop to 8 or below, I get transfused. Due to thalassemia and other factors, I also developed diabetes, hypothyroidism, chronic leukemia, diminished hearing—the list goes on. I take six pills in the morning and seven pills at night, along with an insulin injection, and I take pain medications as needed. It seems I spend my life going from one specialist to another and popping pills. I was transfused a few times as a young child. Not until I started the Desferal testing protocol at the NIH in the late 1970s did I start getting transfused more regularly (about three to four times a year). In the early 1980s, I started chelation. I was in my early 30s at the time. Because I choose to maintain a low red cell count, I do not get transfused on a regular schedule like most patients. I sometimes go 30 days or longer, depending on how bad I feel. On average, I get transfused about eight times a year and get two units of blood each time. Sometimes, I go back to back after four weeks, and sometimes, I can go up to three months without a transfusion. Mind you, 8 is a very low level to function at, and most patients cannot function that low. Every time I get hospitalized for pneumonia, the first thing the doctors do is transfuse me with two units, no matter what my levels are—they are alarmed that I function at all below 10. My doctors, and I are not sure why my levels don’t drop to a “chronological clock.” It may have something to do with my physical activities, stress, other medical conditions and medications, and seasonal changes in the weather.Q3) How do you feel now?A) Medically, at this age, I cannot complain too much. Old age problems are taking a foothold, which aggravates my well-being. I am constantly tired and have to watch and limit my physical activities. Most of my life revolves around seeing different doctors to treat different ailments and taking God only knows what pills and injections for this and that. When my doctors say they are concerned about any old or new ailments, I tell them, “That’s good, you worry for both of us. No sense in me losing sleep over it.” But I do worry, now that I have the responsibilities of a husband and father. I want to stick around to see my child grow up with a father to love and guide him and keep my wife from spending all the money we don’t have!Q4) How did you feel about having thalassemia as a kid?A) Well, to say it stunk is an understatement. I didn’t fully realize that I had this hereditary condition, nor what it was or really meant, other than that I was very sick at times. As a child, I knew that I was alone—no other person had it. Not until the late 1970s (when I was in my late 20s) did I learn that there were many other patients struggling with this condition, mostly younger than myself. That’s when I was introduced to CAF and then TAG. It’s so great now: patients have the ability to learn and research the condition, have peers to associate and commiserate with, and have access to information, doctors, hospitals, and clinics that specialize in treatment for thalassemia. Q5) What’s the most important piece of wisdom you can share with younger patients?A) When I was a child, I didn’t have a care in the world. Not too much information was available in my early years, and life expectancy was in the teens, at best. I remember constantly being very sick as a child, till I reached my early teens. Every time I became ill, it meant a trip to the doctor or the hospital because of my diminished immunity. In my late teens and early 20s, with what was known then, I decided I wouldn’t ever marry and pass this condition on to children. I waited till I was in my 50s to finally marry, so I missed my best years to be married and have children. So if I have to pass on some profound piece of wisdom, it would probably be to responsibly live your life to the fullest. Reach for the stars in education and your career. Fall in love, marry, and have a whole slew of kids while you’re able to handle things better at an earlier age. You are not limited. Life is not constant. Desferal was not available till 30 years after I was born, and now new treatments are on the market for a multitude of ailments. Treatments keep getting better and easier to take. I might not see a cure for thalassemia in my time, but it’s on the way here. I had a late start on Desferal, but I’ve reached 60, an age unheard of in the days when I was born. Even though I don’t tolerate Exjade, many patients do. Things will get better still, as long as there are organizations like CAF and TAG (both lifesavers for me) spearheading medical research and patient care.Q6) What would you recommend for patients who resist chelating?A) What a miracle we have now, to be able to treat children in their early years, almost at birth, with chelating. I sustained a lot of organ damage because Desferal and Exjade weren’t available when I was a child. Even when Desferal became available, I wasn’t fully compliant, and I now regret that mistake. Children must learn that they can live good lives as long as they treat this ailment. Many younger patients no longer suffer through physical deformities and don’t feel the discrimination that their predecessors experienced. Yes, Desferal and the pump are inconvenient, and yes, they create a painful process to endure, but the rewards are so great. Now with Exjade and other drugs on the market, treatments are getting better and easier to handle. I think parents, siblings, family, and friends should encourage thals, love them, show them they are valued, and let them know they want them to be around in their future. Just get them to chelate in any way possible. I think patients who interact with other patients have an easier time with treatments when they see their peers also struggling with treatments. These thals have a sense of community belonging to a group that struggles with the same fears and pain that they do. But as with all people, you can drag a horse to water, but you cannot make it drink. The teenage years are probably the most difficult time for thals to stay compliant, with all the other changes they are going through.Q7) What is the one thing that has helped you live longer as a thal?A ) In short, Desferal of course, but I think my positive outlook, as well as support and care from my wife and child, have a lot to do with it, too.Q8) When were you diagnosed with diabetes, and how did you cope with it?A ) When I started the Desferal protocol at the NIH back in the late 1970s, I was diagnosed as a borderline diabetic. It was not until about 2005 that I crossed over the line. In the early stages, I was educated about what it actually meant to be diabetic, how to deal with it, and taking pills to regulate my insulin. About a year later, I was introduced to insulin injections, stricter diet, and blood-sugar monitoring four times a day. With all the other medical conditions I have, diabetes is a contributory part of my whole medical makeup. I try to maintain my treatment regime, but I don’t let it regulate my life. I don’t know what’s worse, the diet restrictions (being Italian) or the insulin injections (I hate needles).Q9) Do you think smoking has adversely impacted your health or decreased your quality of life with thal?A) This is a very hard question to answer on a personal level. I was 10 when I started smoking. I was strongly influenced by my older brother to smoke—it was the “cool” thing to do at the time, or so I thought. The adverse medical implications at that time (in the 1950s) were not known. I was in Sicily at the time, going to school in fourth grade. All I remember from those years was the kick or energy and light headedness I would get from lighting up. As the years progressed, I still enjoyed smoking—everyone did it. It was not until my high school years (the late 1960s) that the negative effects on health were coming to light. Still, my attempts to quit were short-lived. With or without thalassemia, smoking is an ugly road to travel. The more determined I was to stop, the harder it got. We know cigarette smoking is highly addictive—some say worse than cocaine. In my last (recent) attempt to quit cold turkey, I got the shakes so bad that after a few days, I had to light up to keep from getting sick. I have managed to get my smoking way down, but I have not been able to quit as of yet. The real cost of smoking is too high to calculate, both on your health and your wallet. I now have chronic obstructive pulmonary disease, and God knows what other damage has been caused to my lungs, my other organs, and my general health. All I can say now is, “If you smoke, quit or cut down as much as possible. If you don’t smoke, then don’t start.” Smoking has been the biggest idiocy of my life—it’s not cool, it’s stupid.Q10) When you and your wife were having a baby, did you get your wife tested to see if she carried thal trait, as well? And if she did carry a trait, then did you do prenatal diagnostic test to detect possible trait in the unborn? Any words of wisdom for older adults who want to have biological children?A) Because I’m a thal, I knew that I had to take the proper precautions in marriage. Eileen was tested for the trait before we got married. She was negative. Because we wanted a family, we did genetic screening for any other possible problems with biological offspring. I was 50 at the time, and Eileen was 38. Due to our older ages, conception proved to be problematic. Eileen miscarried on our first try, and it took a long time before she became pregnant again. We did all possible tests, like amniocentesis, while little Paulie was in her womb. Eileen’s pregnancy was also problematic, and we both prayed our child would come out healthy. Paulie was born three weeks prematurely. After his birth, Paulie went through many medical tests for possible problems, and it was discovered that he is a trait carrier. All future attempts at conception after Paulie’s birth resulted in miscarriages. It was a hard and disappointing time for both of us. But Paulie (now eight) has been the best thing possible in my life. Except for minor attention deficit disorder, we’ve had no further problems, and he is now well-advanced in his academic career, (all A’s in second grade, taking fourth-grade reading and third-grade math.) As with all kids, Paulie is in constant motion and never tires from driving his parents nuts! I can’t keep up with him physically most times. There is no reason why many thal patients should not have kids. My advice would be to follow precautionary steps and be continuously monitored by your doctors. There are many ticking clocks working against thal patients (both male and female), so I advise those who plan to have biological children to do it at an earlier age (late 20s and 30s) and to get themselves in the best possible medical condition prior to their attempts. They should be sure their partners have been tested for the trait. At my age, it’s very difficult keeping up with the constant demands that marriage and parenthood pose. Q11) What do you think you’ve done (or done differently from others) that has contributed to reaching this milestone?A) I don’t think I have deviated from what most patients do. I have tried to stay on my Desferal regimen as much as possible, even though I’ve not always been as compliant as I’d like to be. I think my attitude, especially in my later years, has helped me cope and better handle my condition as a patient. Back in my childhood days, information on thalassemia was very sparse. In later years, through the efforts of CAF, TAG, and the NIH, I’ve been more informed and educated, leading to a lot of good choices in my treatments for all my medical conditions. A positive attitude, rather than a “woe is me” outlook, has pushed me beyond my limits in improving my quality of life. With improved quality comes quantity, I guess. I also have to thank TAG for the support I’ve received. Now, being on the Board of TAG, I have better insight into the caring aspect of having thalassemia. When I know that others care for me, it allows me to also care more for them. One thing I’ve done (that some patients find hard to do for various reasons) is be honest and up front with my condition and know my limitations. I don’t advertise that I have thalassemia, but I don’t hide it from family, friends, or complete strangers. I am always open to answering questions about the condition, how it’s affected me in the past, and how it affects me now. If you cannot accept the reality of the condition, denial will work against you in the coming years. If people are your friends, they will accept you as you are. Evaluate those people that shy away from you, and ask if they are truly your friends. Ignorance is one thing that puts a stigma on this condition. Bigotry due to ignorance is a formidable adversary we all have to fight constantly. One other thing that’s helped me is to see the humor in all possible situations. Laughter is the best medicine (after Mom’s chicken soup), so use it frequently, and don’t hold back. Another thing I do is use visualization techniques to fight my thalassemia and other medical conditions. I use my imagination to create soldiers that fight the demons of my illnesses in my mind. I wage battles where my soldiers always attack the demons from all sides. More often then not, I actually feel better after these battles.Q12) What is your biggest regret, if any, regarding to how you managed your thal throughout your life. What would you have done differently?A) As a child coming from a Sicilian family, everything was held behind closed doors (as it is in many other cultures). I did not start to understand thalassemia till I was in my late teens and early 20s. By then, I had already surpassed the “death sentence age” (the early teen years for thalassemia patients past 10 years old). I thought I was one of the lucky ones. Then again, in the 1950s and 1960s, not too much information was available about thalassemia, and much of it was wrong or contradictory. My wakeup call was when I started the NIH protocol on Desferal testing. Till then, I felt I was living on borrowed time anyway, waiting for the axe to fall. After that time, being more informed, I did take a proactive role in treatment. My biggest regret is not staying regular with Desferal treatments throughout my life. Because of a childhood incident, I was always terrified of needles, including Desferal needles with the pumps. In hindsight, I have to say to do the Desferal at any cost; it’s the lifeline for your organs and your well-being and will help prevent additional medical problems in the future.Q13) How do you keep a positive outlook on life?A) We are dealt a set of cards when we are born, and they don’t usually change. In a line from in the movie The Shawshank Redemption, a character says, “You either get busy living or you get busy dying.” It’s your choice. If your see yourself totally limited by thalassemia (or any other medical condition), then your outlook is bleak, and you are not looking forward to a good life (even if it might be limited). On the other hand, if you see that your medical condition(s) is just a condition to conquer or treat on the road of life, then you can get going to achieve that which you may feel is impossible. If history has taught us anything, it is that it repeats itself, and some of the most challenged people have achieved the most stunning lives and accomplishments. There are many other medical conditions far worse than thalassemia, and I’m grateful that I don’t have one of those. It’s like crying because you don’t have shoes to wear and then seeing someone who has no feet. You could be worse off, so be thankful you’re not.Q14) We all have learned to manage our health and career together. But there are times, at least with me, where I have to choose one. For example, I’ve been in real need of a transfusion, but my work at the same time was critical. At crunch times, what do you choose, career or health, and how do you make this decision?A) The simple answer is to choose your health. Your career will falter or end without your health or if you’re dead. But life is not simple. I approach this situation with a “time and place” analysis. Let’s take “place” first. Obviously, you cannot be at two places at one time; therefore, see when your schedule allows time to be at either work or the hospital (use a 24-hour day, 7-day week). Next is “time.” Since your career in the medical field sometimes does not allow you much wiggle room, what window of time do you have to get to the clinic during its hours of operation? How low can your blood counts go before you must get transfused? Within that time frame, you must make the “time” and “place” line up. Each person is different. I, for example, get transfused now when I get to, or go below, 8, and I get two units to bring me back up to 10. When you get transfused, see if you can bump your units up by one, so that your transfusion schedule can be drawn out an extra week or so—fewer transfusions will create fewer scheduling problems. Or maybe you can ask if your clinic would do nighttime services one day a week or every two weeks. Sometimes, you have to approach the problem from a different direction.Q15) What medical advances in your lifetime have had the greatest impact on you?A) Probably I would have to say Desferal and better antibiotics first, with polio and flu vaccine coming in a close second. Desferal has definitely bettered my medical condition, even though I sustained a lot of organ damage prior to that, since it was not available until I was 30. I get pneumonia about once a year, and many people would die from that because of a compromised immune system, but even though I spend about a week in the hospital, the newer antibiotics put me back on my feet. In my early days, polio was a menace, and now it has been virtually wiped out. Flu vaccines have prevented me from getting the flu. On the surgical front, orthoscopic surgery and organ transplants have come on the scene. When I was a child of nine in Sicily, living in a small town high up on Mount Etna, I became ill due to a B12 injection that became infected. After many nonsurgical attempts to treat it, the doctor was resolved to lance the area below my hip to treat the infection. There was no anesthetic to speak of at that time and place. A stick wrapped in gauze was placed in my mouth, and my parents held me down in my bed as the doctor stabbed the area with his scalpel. I need not say more on that. In my late 20s, when I had my spleen out (again in the olden days), it was an eight-and-a-half-hour procedure in which I was revived twice after being clinically dead. How far things have advanced in this field!Q16) What is your role as D.C. chapter president? What are your main duties? What do you feel is your greatest accomplishment as chapter president?A) As president, the main duties are to act in a leadership role and to abide by the CAF Chapter Rules and Regulations. As with any leadership role, it is important to set goals for your chapter to achieve. I might add that the success of meeting goals is mostly dependent on the support and participation of officers and members in the chapter itself. My best or favorite accomplishment for many years has been speaking at the Maryland and Virginia Regional Order Sons of Italy in America meetings when they hold their state chapter elections. I represented CAF and TAG to spread the word about Cooley’s anemia This is one of the most gratifying ongoing experiences I have been able to do—educate their membership about thalassemia and encourage their efforts to run fundraisers to help people with thalassemia.Q17) When did you join the TAG Board, and what motivated you to do so? How has being a part of TAG impacted your life?A) Three members of my local chapter were on the TAG Board. I, too, wanted to volunteer my skills and time to keep an open line of communication with TAG so I would have the most up to date information for our members during CAF chapter meetings. Being older, I felt I had some insight that would benefit TAG as a group. I was going through a lot of changes—marriage, parenthood, protocol participation—and knew that patients could draw on my experiences. Being on the Board of TAG is very rewarding for me, getting to know the members and helping patients have a better life both physically and mentally. I have met and made many new friends along the way and have learned that thal patients are just regular people with all the fears, hopes, and dreams of non-thals. It has given me a purpose and opportunity to give back to the community for all it has given me. Spending so much time being on the Board, I consider the Board members as part of my extended family. As with any family, we don’t always see eye to eye on all issues, but we always end our days as friends. With TAG on the front lines of helping patients with thalassemia, we’ve had many moments to educate, guide, and celebrate happy events with and for them. There were sad times, too, as we mourned the passing of Board members and patients we’d all come to know and love. Many Board members are in professional fields or medical careers. The many hours and hardships most members endure to perform selfless acts for the betterment of patients’ lives amazes me. TAG gives us additional insight as to what medical advancements are coming to light and how to deal with introducing changes to the thalassemia community. We also look ahead to lobby the government for the needs of thal patients, such as a safer blood supply. It is a rewarding privilege to be on the Board. Q18) What kind of emotional or psychological support (or lessons) did you receive from your parents and family growing up that might have helped you deal with challenges related to thalassemia?A) As a child, I didn’t actually know I had thalassemia. I would get sick quite often, which sometimes required home doctor visits (yes, in those days—the 1950s—doctors actually would make house calls) or hospital trips. My parents always treated me as if this was nothing unusual, but I would notice that my brother did not have these episodes. I guess my parents were trying to toughen me to handle further episodes in stride and challenges ahead. Remember also that in those days, thalassemia was more of a death sentence in the teen-age years, and parents expected to lose their child. My pediatrician had diagnosed my condition shortly after birth, and my treatment was based on what was known in the medical field at the time. Having an anemic condition in those days meant taking iron supplements, which is now known to be poison for thals in these days. So because my parents didn’t treat me any differently than my brother, I learned to accept my illness and deal with it. I guess this was one of the best approaches they could have taken. It has helped me over the years to get through many trying times, not only with thalassemia, but also with other medical conditions and real-life experiences.Q19) What kind of support do you receive from your wife and son that is helpful in meeting challenges?A) I met Eileen at the NIH in the 1990s (she was one of my phlebotomists) about 10 years before we were married. She was a very caring and supportive person, knowing and understanding my condition. (In hindsight, she probably wanted me to be in the best of health so she could marry me for my great personality, humor, and good looks, not to mention other positive attributes.) All kidding aside, Eileen has been with me through thick and thin, in all my medical crises and care for the last 20 years or so, both before and after we were married. On two separate occasions, she insisted that I go to the hospital, which ended up saving my life. Paulie, now eight, has always helped his daddy with the finger pricker when I do my glucose readings for my blood sugar and gives me a kiss on the cheek so the “booboo” feels better. As a younger child, he was fascinated by the Desferal pump and would ask me if it hurt. On days that I get transfused, Paulie comes to the hospital to visit me and helps me get up from the chair to go home. There is no way to assign a value to what love and support they give me and the good they do for my spirit and soul.Q20) What was the biggest obstacle to overcome in your life, and how did you do it?A) There have been many obstacles, and at the time of dealing with each, it seemed to be the biggest. The one thing I did that has probably made me the happiest next to having my son (which was also one of my biggest hurdles) was saying “I do” and getting married. For 50 years, I had it ingrained in my head that I would not get married and have kids. I’d just be a bachelor and not leave a widow and children when my time came. Well, thanks to a well-placed kick in the pants from Dr. Susan Perrine (bless her heart forever) from Boston University School of Medicine, I was convinced to go down the path of marriage and children. Seventeen days after 9/11, I was with the justice of the peace at the courthouse, saying those two words, “I do.” After the birth of Paul, about two years or so later, Eileen and I were remarried in church for religious reasons—Paul’s baptism. I can honestly say that I love my wife and child more than life itself.Q21) Are there choices you’ve made that, looking back, you might want to alter?A) Yes, yes, yes, and yes! Without good health of mind and body, life takes a darker path. Hindsight is always good to evaluate the path you’ve been on and the mistakes to avoid in the future. It also is a good platform to give others prudent advice. Medically speaking, my worst choices were not staying compliant with my Desferal and smoking. Both have adversely affected my well-being. I still struggle with both (and probably will for the rest of my life). Unfortunately, I couldn’t adjust to Exjade. Looking back, in short, my advice to others would be, “Don’t smoke, don’t do drugs, drink in moderation, watch your diet, stay compliant with medical regimes for all your conditions, love and live your life as if it were your last day, live responsibly, give back for all you have received, choose your friends wisely, do not limit your horizons to what you can reach, and be true to yourself and others.” I can’t say I’ve always followed all those do’s and don’ts myself, but it is the best advice I have to give.Q22) What do you think your 10-year-old self would say if he knew that one day he’d be 60?A) What a scary thought for my 10-year-old-self! At that age, anyone older than 30 or 40 is ancient. Time goes by so slowly when you’re a child, and as you get older, the passing of time on the calendar seams to pick up speed at a rapid pace. It’s like toilet paper: the more you use, the smaller the roll gets and the faster it goes. Reflecting back, I could say that by old standards, I’ve been able to live four lifetimes, if not more. I cheated the grim reaper of death due to thalassemia. It’s funny—except for my medical conditions, I feel like I’m still in my 20s or 30s at heart. It’s not until I take a good close look in the mirror that I see an older me staring back. (That’s probably why I only trim my beard once a month—so I don’t have to see the guy in the mirror looking at me). About 30 years ago, when I started taking Desferal, I saw a realistic shot at reaching my mid-40s, at the most. With all the advancements in medical science since that period, my death sentence has been commuted many times over. I now realize that I will not die from thalassemia, but probably from other causes. For younger patients, thalassemia does not mean death at a young age, but rather a major inconvenience to deal with and treat. I am grateful for the efforts of CAF back in the 1950s and 1960s to spearhead so many changes for the well-being of all thal patients, and I’m grateful to TAG for providing a forum for patients to help other patients deal with their condition, fears, and hopes for their future lives. Treating the body without treating the soul is not an ideal situation. Patients of any age need to know that other patients are out there that will lend an ear, help them through their tough times, and encourage their hopes and dreams, as they did for me.Q23) If you could, would you exchange your life for one where you did not have thalassemia?A) I can’t lie. My first thought is, “Yes! I would exchange my life for one without thalassemia.” Who wouldn’t? But on the other hand, I have been to many funerals for friends and family (many much younger than me) that did not have thalassemia, so in retrospect, I guess I feel fortunate I have the life I have. At this point in my life, thalassemia is part of my persona, my id, my character, and my life experiences. If I hadn’t had thalassemia to deal with these many years, I would have been a different person, maybe with a better life, but maybe not. Who knows? But I would not have met, nor married, Eileen, nor had my son Paulie with her, which are two of the most defining moments in my life. So with that in mind, I’d have to say, “No, I wouldn’t exchange my life for any other.” I think I turned out well under the circumstances and don’t want to change that which shaped my character. My life has been blessed (in most cases) with those I love in my family and my friends. The movies It’s a Wonderful Life and Life Is Beautiful have some parallels to my life and their messages had an influence on me. The grass is not always greener on the other side of the fence.ConclusionAs much as we are all individuals, the more we are the same. I see myself in many of the thal patients I know who have the same hopes and fears as everyone else. Some younger patients just might see themselves on some of the roads I have traveled, going through periods of awkwardness and self-doubt in childhood to their adult phases of life. Just remember that we all have choices to make in how we live, so choose wisely.Note: My thanks to the TAG Board and CAF personnel for contributing questions.
This deserves special attention. 60! From CAF http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=477%3Athalassemia-patient-reflects-on-milestone-60th-birthday&catid=1%3Alatest-news&Itemid=1[/quotehe has truly ruled thal !!.. great source of boost up for me..
I am very sad to announce that Carl passed away this week. He was a real inspiration to thals everywhere. If he could live to over 60 when he had no chelators available until adulthood, we should all know that it is possible for thals to live that long and even longer with the treatment available today.RIP Carl.