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    Community Voices

    I was on a medical diet for more than 15 years. Then I was off the diet as I was proven I don't need it anymore. I obsess and binge eat.

    I obsess and binge on foods I never got to enjoy from my childhood. Any way to control it more and not binge eat? Most of you might not know what condition I have and it's a pretty darn long story. If you are interested, look up the movie Lorenzo's Oil. Anyway I was on a strict low fat diet for more than 15 years and it affected my life as I know it for years. I was recently off the diet and I was obsessed with the new foods I never got to eat. I even sneak them at night. It's really a pain and I feel like I have an eating disorder from it. Anyway to ease the binge more and have control while celebrating my new found freedom? #BingeEatingDisorder #MedicalDiets #Adrenoleukodystrophy

    Jesse Torrey

    How I Answer Questions About the Future With My Medically Complex Son

    “We enjoy today and hope for a lot of tomorrows.” That’s how I answered a question I was asked yesterday on one of my Facebook pages. The person was asking how to live knowing that there will likely be a “future loss.” You might think it is a cruel question for parents with medically complex children but trust me, it’s a question that we all have struggled with. The pain of knowing that you will likely outlive your child and the fear that you won’t — who, other than you, can you trust to care for your child? You worry about a simple cold leading to a fever and then a seizure. You worry about what you might find when you open your child’s door in the morning. You try to plan for a future, but limit the future to a few years, not decades…worried that being too greedy might somehow jinx things. Everyone worries about their children. My daughter has no underlying conditions, but we worry about her making poor college choices that could put her in danger. We worry about her traveling alone, working too hard, falling asleep with a candle still lit. Just last night I woke up at 3:00 am and spent two hours worried that we had somehow pressured her into following a career path towards medicine (I called her in the morning and asked if she felt pressured,  “You’re nuts, but I love you.” Was her answer). You worry about all your children, but the worry about your child with complicated medical conditions is more profound, because it is more real. Despite all the worry, your medically complex children eventually teach you not to waste time with too much worry. You need to enjoy today because tomorrow is not assured. You need to slow down and enjoy the sunsets, the song playing on the radio, the newest episode of Impractical Jokers (my son’s favorite TV show). I’m not saying that I never have moments where fear, despair, dread and depression take over. I bargain with the universe. I yell and cry. But, then I remember my role in all this is to help provide my son the best life possible. I get up and wash my face and move forward and enjoy today. The parent who asked the question yesterday was new to this life. It will take some time, but I know they will find their footing and it will be their child that will lead the way. The fact is, folks, life is fragile. We are all going to die. None of us are assured unlimited days. Our family tries to enjoy and appreciate as many moments as possible. I encourage you all to do the same.

    Community Voices

    Everyday life with autism and a rare disease #Autsim #Adrenoleukodystrophy

    For all you people who are wondering what is life like with autism and ALD, it can suck but you gotta push through. For starters I have the disadvantages of Autism and not eat much fatty foods. At least I'm verbal. Sorry, I don't like to use "functioning" terms. Anyway everyday life is always stressful. For starters you can eat only 20 grams of fat per day which isn't enough for most people. I constantly have to take pills, and go to many many drs visits. More times than the average person. Plus you feel like there is not enough research on the disease. On to Autism. I have some social disadvantages as well. You have to face some stress. Bigots making fun of the spectrum calling us "weird" "monsters" but that is simply not true. My life is always busy with some running around to services, Drs, etc. I always get stomach aches from all the stress. I'm always tired and I feel done. My life is always hectic even as a little kid where life should be care free. I do thank the people in my life about their help and things. I constantly need vacations because I just need a break with the constant struggle with autism and ald. I just want to spread awareness. Thank you

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    Taylor Kane

    Deciding to Have Kids as the Genetic Carrier of a Rare Disease

    As I write this, I am approaching two huge milestones in my life: turning 21 and graduating from college. The advent of these watershed events reminds me that it’s time for me to really start planning for my future. While most of my peers envision both wedding bells and baby carriages, I can’t even envision getting married or having children.I know you’re probably thinking something along the lines of “you’re still young, you’ll change your mind.” I really don’t think I will. I’ve felt this way for as long as I can remember. Why? There are several reasons. First, I simply have never been able to picture myself walking down the aisle or taking care of a crying infant. I don’t know exactly why: although I certainly respect the institution of marriage and adore children, it’s just something that I have never truly desired for my own life.There’s also the fact that I’ve always been very independent and career-oriented. Now I know many women are able to successfully balance having an incredible career with being both a wife and a mother, but I’m not so sure that I could do it — at least, not to my satisfaction and without feeling like I am constantly being pulled in a million different directions.However, probably the most important reason that I don’t know if I want to get married or have children is the fact that I am a carrier of a deadly genetic disease.When I was 3 years old, my dad was diagnosed with adrenoleukodystrophy (ALD). ALD is a rare disease that destroys the white matter in the brain causing the loss of cognitive and physical functions, and eventually resulting in death (unless it is caught early and treated with a risky bone marrow transplant or still-experimental gene therapy). ALD is an X-linked recessive disease, which means that males are most severely affected with the disease, and females are carriers (many carriers can and do experience physical symptoms themselves, just usually not life-threatening ones). Carriers of X-linked diseases have a 50 percent chance of passing the defective gene down to any children they have.I’ve known that I was a carrier of ALD since grade school. I made the decision long ago that I would never naturally conceive children of my own because of the risk that I would have a boy who would eventually suffer the same fate as my dad. Even though I was only in kindergarten when my dad died, I will never forget the way ALD ravaged both his body and his mind in those last few years, transforming him into a shell of the father I once knew. He became bedridden, unable to walk, talk, swallow, care for his own basic human needs, or even understand who I was.Of course, I do understand there are alternative methods of reproduction which enable genetic disease carriers to have healthy biological children free of the disease they carry. There is prenatal chorionic villus sampling (CVS) which can be performed in the first trimester of pregnancy. This procedure involves testing the placenta to determine whether the fetus has the genetic condition at issue, allowing for early termination of the pregnancy in the event of a positive test result. Personally, I believe CVS is a sound and reasonable option for many women. It’s just not for me.There is also in vitro fertilization (IVF) with pre-implantation with genetic diagnosis (PGD). A mouthful, I know, but IVF with PGD is another option which allows genetic disease carriers to have biological children without the risk of passing on the disease. But the procedure is often mentally and physically grueling, not to mention extraordinarily expensive when it’s not covered by insurance (which it often isn’t), and may not work the first time (or the second, or the third, etc.). If I ever do change my mind and decide to have my own children, this is the option I think I would choose.There are other alternative reproductive methods, too, but right now, the prospect is too daunting to even imagine.As to my lack of enthusiasm about marriage, I’m not exactly sure how that fits into the mix, but it might have something to do with my subconscious fear that being a genetic disease carrier will somehow cause any emotional and spiritual bond I develop with a man to eventually unravel. I cannot help but worry that my inability to ensure that I can produce healthy biological children without resorting to difficult and costly medical procedures that might not be successful (and which some consider immoral) will be a deal-breaker for many men. Or even if it’s not a deal-breaker, that it will ultimately put an insurmountable strain on the relationship. Yes, I know the “right” man should accept me for who and what I am and that no one’s perfect, but to this point it’s been hard enough to find someone who is even somewhat accepting of my stubbornness, impatience, and sometimes argumentative nature. How can I expect someone else to wholeheartedly embrace my “defective” genes? I know at some point I will have to confront my apprehensions head on. Perhaps one day, I will even change my mind about marriage and having children. But right now, I’m choosing to rest in my ambivalence. It’s fine with me if my happily-ever-after selfie is a picture of me standing tall in a pantsuit rather than posing in a wedding gown or a maternity dress. While carrying a genetic disease can hardly be described as a positive experience, it has taught me one important thing: the value of my womanhood is not rooted in what my body can create, but in the person I can become. Disclaimer: Opinions are my own and not representative of my organization. I am in no way discrediting any woman or person’s decisions about marriage and having children, nor am I implying that carriers of genetic diseases should not get married or have children.

    Community Voices
    Community Voices
    Taylor Kane

    Being a Female Carrier of Adrenoleukodystrophy

    When I was 5 years old, my dad passed away from a rare, deadly genetic disorder called adrenoleukodystrophy (ALD). This condition primarily affects males and results in severe neurological impairment, ultimately resulting in death unless diagnosed and treated before symptoms develop. ALD affects people differently, but in my dad’s case, he lost his ability to talk, walk, swallow, and understand what was going on around him. Some males with ALD also experience vision and hearing loss.ALD is an X-linked disorder which means it manifests on the X chromosome. Since males (XY) only have one X chromosome and women (XX) have two, my father unavoidably passed the ALD gene to me, making me a carrier of the disease. ALD is known to be a recessive disorder, which typically means that carriers are completely asymptomatic. However, for ALD and a number of other X-linked, recessive genetic disorders, it has been determined that carriers often do develop symptoms of the disease, ranging from mild to severe. In fact, with ALD, recent studies have shown that over 85 percent of female carriers eventually develop symptoms, which can include difficulty walking, bladder and bowel dysfunction, and even cognitive impairment. There has not been sufficient medical research or attention with regard to the physical symptoms developed by X-linked carriers or their treatment, and in many cases the symptoms female carriers face are overlooked or misdiagnosed by the medical profession. Thus, many carriers themselves have no idea their symptoms are related to the disease they carry.As a passionate feminist, I am well aware of the fact that males have traditionally come first when it comes to research and medical treatment. Our symptoms oftentimes get brushed off as PMS or anxiety. To me, the most nerve-wracking part about being an ALD carrier is the fact that there are no known measures I can take to prevent these symptoms or treat them if or when they arrive.In addition to physical symptoms, female carriers have very little support with regard to difficult decisions they must make concerning their reproductive options. All X-linked recessive carriers have a 50 percent chance of passing the genetic mutation to their children. Since ALD is a progressive disease, if I decide to have children in the future, the route I will take to ensure I have healthy children is in vitro fertilization (IVF) with pre-implantation genetic diagnosis (PGD). This would allow me to have children who are completely free of the ALD genetic mutation. Unfortunately, many states do not require insurance companies to financially cover this procedure, and as it is extremely expensive, many female carriers are simply unable to afford it and are left with a very difficult decision: potentially having a child with a severe genetic disease or to give up their dream of having biological children.Being a carrier of an X-linked disease can be incredibly isolating. However, I have been fortunate to meet and form relationships with so many brave carriers of ALD and other X-linked disorders, which has made me feel much less alone in this journey. It has also spurred me to take action. Last year, I created a 501(c)3 nonprofit organization called Remember the Girls, to raise awareness of the issues we face as carriers. I hope to continue to build Remember the Girls, and create a coalition which unites female carriers of X-linked genetic disorders and raises awareness of their unique and pressing issues. As carriers, we deserve to be seen. We deserve gender-specific research, and we deserve to be able to afford to have children without the fear of passing our disease on to them.Although I am unsure of what else the future holds for me, one thing I know for sure is that I will spend the rest of my life advocating for carriers, rare disease patients, and their families.For more information, visit the closed Facebook group, Remember the Girls or follow Taylor on Twitter and Instagram

    Jesse Torrey

    Our Family Secret That Made a Difference In My Son's Health

    If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying, “ Jack only ” and there’s a lingering smell in the air. We had someone working on the alarm system last month and he asked me what kind of tea I was making. When I told him it wasn’t tea, he said with a big smile on his face, “I didn’t really think so.” I reacted by doing what I’ve done for the last six months. I just politely smiled and changed the subject. I haven’t wanted to discuss it, feeling people might judge, but last week I was forced to disclose our family’s little secret. Wheeling Jack through the airport in Miami, we were stopped at security and asked for our boarding passes and IDs. I handed over our boarding passes and my husband and I each presented our driver’s licenses. The guard looked up and said, “What about the kids?” Unless traveling abroad, we’ve never had to present any ID for the children, and no one had asked us for them on the way to Florida from New Jersey. “They’re kids,” I said, but as the words came out of my mouth I suddenly realized our son, Jack, isn’t a kid anymore — he’s 18. Crap. “I’m sorry I can’t let him through security without a photo ID.” “Sir, we don’t have one. I didn’t know he needed one. They didn’t ask us for one when we left NJ.” “NJ should have asked. I really can’t let him through.” My family was looking at me. The people behind us in line were glaring at me. I felt myself beginning to sweat (although that may have just been a hot flash). I started wondering which one of us would stay back with Jack and how long it would take to mail the passport, when I realized we did have something. I opened my wallet and pulled out the one form of photo ID I have for Jack. “Will this work?” The man took the card and held it under his fancy light. He then looked up at me as he called his supervisor over. They both looked down at the card, mumbling to each other (and giggling) then looked up, “OK, Jack. Have a great trip.” They each gave Jack a high-five as we wheeled him away. Apparently, medical marijuana cards are an accepted form of ID by the TSA. My son, Jack, has a rare disease called Adrenoleukodystrophy (ALD). It has left him with a complicated and often uncomfortable life. Over the last year, I’ve read stories about people with ALD and similar diseases having success with medical marijuana (cannabis). I discovered cannabis has many very beneficial medical benefits: anti-nausea, suppresses seizure activity, anti-inflammatory, anti-anxiety, combats neurodegenerative disorders. All this with limited risks, and certain varieties do not even cause a “high.” We’ve tried countless things to help Jack. There is no “Guide to Treating People with ALD.” We’ve tried everything from drugs designed for Parkinson’s Disease to speech therapy on a horse (it’s called hippotherapy and Jack loved it, but it got rather expensive). Marijuana seemed like it was worth a shot. Jack isn’t working any heavy machinery or driving, and we are not worried about pot being a “gateway drug.” After all, Jack can’t open the fridge by himself and he has already used Codeine and Oxycodone and Vicodin (and on and on) without issues. So, I made an appointment with Jack’s doctor to discuss introducing marijuana to our list of medications. Even though I was confident it was a good idea, I still felt nervous approaching the subject; as if I was recommending that my son do something scandalous. But as soon as I mentioned it, Jack’s neurologist agreed and we started the process. Two more doctors (including a psychiatrist), $200, and six months later, we were mailed our medical marijuana cards and a list of dispensaries in New Jersey.   The day after receiving our cards in the mail, Jack and I found ourselves on a suburban street in a neighboring town going into an unmarked building to purchase our first batch of an experiment. We were greeted with warm smiles and an unexpected education. As rigorous as it is to get a medical marijuana card in New Jersey, once you get it, there is very little hand-holding by doctors or by the state. It’s up to you to figure out what type of cannabis to buy, how much to give, and how to administer it. For the last 10 months, I have been trying different varieties of marijuana, making oils and butters and baking treats for Jack. After all, Jack couldn’t smoke even if I thought it was a good idea. So, here I am, a suburban housewife, using the same oven that I’ve used to cook my Thanksgiving turkey, to make my 18-year-old son pot brownies and cookies. Never in a million years did I imagine myself at 47 making pot brownies for my son. I’ve never been much of a baker or a “baker.” I’d be lying if I said I never experimented with marijuana, and I’d also be lying if I said I never inhaled. Marijuana was around much of my high school and college years and has even popped up at an occasional dinner party in our suburban town, but I have always preferred the buzz of a little too much vino to the buzz of a joint being passed around a circle. And, as wild as my social life was as a young person, I’ve always been uncomfortable with breaking the rules. As mainstream as pot was and has become, it’s always been illegal, but that is changing. There has always been a stigma attached to marijuana, and it’s because of that stigma that I waited for months before revealing our secret to our friends and extended family. I wanted to be sure I’d done all my homework on the topic and I wanted to be sure it worked. At first I thought I might be imagining it, but thanks to keeping track of doses, behaviors and sleep, we quickly found there was no denying the benefits of our new medication. Now our family is less and less concerned with that stigma. Since we have introduced marijuana to Jack’s list of medications, the positive results with sleep, appetite and spasticity have been profound and we are now solid in our belief that marijuana is a remarkable drug with a host of benefits. If it helps Jack, it’s likely to help others and we need to spread the word. We are not alone. Recently, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and its health effects. After considering more than 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease not so different from ALD) and for treating nausea and vomiting associated with chemotherapy. It’s time we all take a look at our medicine cabinets and realize they are filled with far more harmful things than cannabis. Our experience with Jack and having observed how cannabis is helping him, has convinced me more than ever of the fact that our country needs to see positive changes in policies regarding marijuana. As of November 2016, 28 states and DC have legalized medical marijuana. That’s more than half of the United States. It seems like we’re heading in the right direction, but when I started working on our taxes, I found some disappointing news: “You can’t include in medical expenses amounts you pay for controlled substances (such as marijuana, laetrile, etc.) that aren’t legal under federal law, even if such substances are legalized by state law.” Marijuana is still a Schedule 1 substance which means that, “It currently has no accepted medical use and a high potential for abuse.” Half of the US says otherwise! We can deduct all of Jack’s doctor’s bills and medical supplies, including personal care items, syringes, even all of the supplies for his service dog, but the $540 we spend for an ounce of cannabis every month for the medication that was prescribed by his doctors and is working can’t be included as a medical expense? This is illogical and our society needs to adapt to what science is telling us. Medical marijuana works. Fortunately, our family has the financial resources to continue to have medical marijuana as part of Jack’s daily regimen, but many others do not have that luxury. When is the tax code going to catch up with science? Now that we are outing ourselves as cannabis supporters, we are going to do our best to spread the word. Hopefully, if more people see the benefits of this medication, the laws will continue to move in the right direction. After all, if the TSA can approve a medical marijuana card as a legitimate form of ID, can’t the federal government see it as being a legitimate medication? Follow this journey on Smiles and Duct Tape. We want to hear your story. Become a Mighty contributor here . Thinkstock image by TheCrimsonRibbon

    How a Grieving Mom Taught Doctors About a Disease They’d Never Heard Of

    Sawyer just a month after his ALD diagnosis in April 2013 Janis Sherwood lost her son Sawyer 13 years ago to a disease she — and most doctors they visited — had never heard of: Adrenoleukodystrophy (ALD). It’s a genetic disease that “damages the membrane that insulates nerve cells in your brain.” Symptoms of ALD are similar to Attention Deficit Disorder (ADD), but ALD progresses rapidly and leads to a vegetation state and death if it’s caught too late, according to the ALD Foundation. If detected early, patients have more options for treatment and a better chance of surviving, according to the Stop ALD Foundation. Sawyer was diagnosed with migraines, ADD and eventually spinal meningitis. While signs of ALD were present by the time he was 2 and a half years old, doctors didn’t know he had ALD until it was too late. He died when he was just 8 years old, six months after his diagnosis. Sherwood knew she wanted to raise awareness for the rare disease even before Sawyer died, so she started Fight ALD to save lives through educating people about the early onset symptoms and diagnostic tests. “I went to a conference with mostly medical students, and I realized about 75 percent of the people I talked to had never heard of ALD,” Sherwood told The Mighty. After reading a story about a man’s cross-country road trip in The San Diego Union Tribune, Sherwood was inspired to take her awareness efforts across the continental United States. A family friend donated an RV, and Sherwood took off across the country, stopping at children’s hospitals along the way to drop off pamphlets she created about ALD symptoms to detect early diagnosis. She began in Long Beach, California, but soon realized she needed to visit more than just large research hospitals. What started out as a five month trip turned into a five-year, 44,000-mile journey. A map of Sherwood’s route Sherwood traveled to every state in the continental U.S. and visited more than 3,000 medical facilities. “I did everything I had set out to do,” she told The Mighty. Throughout the five-year road trip, Sherwood returned home to California sporadically to regroup. In between dodging hurricanes in Miami and Boston, facing RV engine trouble and dealing with some hospital employees that quickly ushered her out their swinging doors, Sherwood managed to also find time to fundraise. Sherwood’s RV in Arkansas The Sherwoods moved to California in 2000 because Janis’ husband, Bill Sherwood, got a job with Stone Brewery, and the company has been part of ALD fundraising since Sawyer’s diagnosis in 2003. Stone Brewery drafted a special edition beer with Bill Sherwood’s recipe called “Sawyer’s Triple” initially to raise money for Sawyer’s potential bone marrow transplant. Sawyer died the day before the beer was released. Sherwood and her brewery festival volunteers The initial money from Sawyer’s Triple sales helped get Fight ALD up and running, and this August will be the 10th year Stone Brewery’s beer festival donates part of its proceeds to Fight ALD. After getting involved with Stone Brewery’s festival, Sherwood started fundraising for Fight ALD through other beer festivals. She organizes a group of volunteers in exchange for donations from the festivals. “I guess the word got out there that I have really good volunteers,” Sherwood told The Mighty. “We kind of came up with the slogan ‘drink beer for charity.’” Other than Stone Brewery’s festival, Sherwood has raised money through both Guild Fest and Rhythm and Brews in San Diego. Although Sherwood’s cross-country journey is over, she isn’t going to stop fighting ALD anytime soon. She’s proud of victories so far — California Governor Jerry Brown signed a law in September 2014 requiring newborns in California get screened for ALD, but screenings haven’t actually started yet. She ultimately wants all newborns worldwide to be screened for ALD. She continues attending medical conferences and urges parents she meets to get their babies screened, a test that costs about $170 right now. “Early diagnosis… that’s the key take away,” Sherwood told The Mighty. You can read more about Sherwood’s fight to stop ALD on her website.