Dar Hall

@chronicdiseasediva
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Convincing My Doctor to Treat My Rare Disease, SCID-ADA

Imagine being ill and having to use your precious energy to convince someone to treat you or prescribe you life-saving medicine because so few people in the world are familiar with your condition. It is a process that makes you feel as if you’re falling right through fragile ground, watching it shake and shatter beneath you, regardless of how hard you try to plant feet. Many rare patients spend more time than they should trying to “figure it all out on our own” because doctors are hesitant of treating the unknown. While this is sometimes understandable, it is extremely taxing on patients, who are often desperate for just basic care. Unfortunately, little is known about adults living with my disease, SCID-ADA, or how it progresses. It can be a scary world to live in because patients with rare and chronic illnesses usually won’t just get one diagnosis — they get many. To quote my orthopedist, “Wow, you have a lot of shit going on.” Patients like us have to open the door to the inexplicable and unfathomable when it comes to our health. “What’s going to happen next?” “Will I become immobile in the next 15 years?” “Will I be on oxygen in the next 20?” As troubling as this is, the most heart-wrenching question has been, “Which doctor will be willing to treat me?” Here is the raw truth: most doctors are scared of the unknown, to attempt and treat a patient with a disease they have yet to encounter. It took me four years of severe gastrointestinal distress to find a doctor who didn’t blink at the thought of doing a colonoscopy on someone who has multiple rare and chronic illnesses. I chased down doctors and answers on my own. “Let’s hold off on the colonoscopy. You have a very weak immune system. We don’t want you to get an infection.” I told each and every one of them I understood the risks and would gladly go through with all of it to at least rule things out to have peace of mind. No one listened. They were scared. In March, as I sat in my infusion chair, it was my very concerned nurse who had been with me for five years who said, “Enough. You need to find better care.” While the rest of my medical team continued to throw their hands up in the air, she took the time to make outside calls and find the best center for those with complicated GI histories. I couldn’t have been more grateful. In April, I finally had the colonoscopy I had begged for on my hands and knees. But why did it take so long? Is the fate of a rare disease patient up to something as unpredictable as plain old luck? My last feat was to convince my new immunologist to please treat me. I was the first one with SCID-ADA she’d ever encountered. She read about it online and became very anxious. “You are going to need a lot of help in life, and I’m not sure I’m the one who can help you.” I pleaded with her. In fact, on the day of my second visit with her, I strategically asked my husband to come, and put on makeup (something I rarely have the energy for). I attempted to look as healthy as possible. “Please, no one will know how to best treat me. I just need you to be able to work with me when complications arise. I don’t expect you to have answers because no one will.” If a doctor is willing to take the “risk” to treat a rare patient, the rewards can be numerous. When you choose to care for a rare patient, you get to meet someone who is (and usually has no choice but to be) thoroughly invested in their health and well-being. We often know more about our disease than other doctors. We can help you become an expert. You get to contribute to literature and general knowledge in medicine. Every single bit of information documented about our patient histories is invaluable to the future generations who are born with or develop rare conditions. While the doctor gets to better understand disease progression and become familiar with new drugs and drug development, he or she is reaping the ultimate reward, in my opinion. Should the day come again when a young child and parent enters your office with the same condition, you just might be able to say, “Yes, I can help guide you.” We want to hear your story. Become a Mighty contributor here . Photo by Debashis Biswas, via Unsplash

Community Voices

What task has been the most difficult for you to do recently?

<p>What task has been the most difficult for you to do recently?</p>
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Community Voices

What task has been the most difficult for you to do recently?

<p>What task has been the most difficult for you to do recently?</p>
317 people are talking about this

Bernie Sanders' Campaign Plans for the Disability Community

The 2020 presidential election is now less than a year away, yet there are still many candidates — especially Democratic candidates — vying for your vote. Earlier in the election cycle, Lauren Appelbaum, vice president of communications for RespectAbility, pointed out that disability was hardly considered in most presidential campaigns, despite nearly 25% of the population living with a disability. Though candidates such as Andrew Yang, Pete Buttigieg and Julián Castro have since spoken up on the campaign trail for people with disabilities, Mighty contributor Brooks explained that people with disabilities shouldn’t be an after-thought during campaign season. Brooks wrote in the article, “To the 2020 Presidential Candidates, From a Voter With a Disability“: Presidential candidates should actively talk about and raise awareness of the plethora of issues those in the disability community face. You all should speak to us, get to know our stories, our hopes, our fears and our struggles. I believe America is at its best when everyone has a chance to contribute to his or her God-given potential. So this election, please don’t use us as mere photo props or as another talking point. The Mighty reached out to the leading Democratic presidential candidates and asked them to weigh in on some of the most pressing questions our disability, chronic illness and mental health communities wanted answers to on how they will prioritize accessibility, health care costs and mental health treatment. Sen. Bernie Sanders’ (D-Vt.) campaign was the first to respond to our interview request. Appelbaum pointed out that Sanders was the only candidate as of June to have a section of his website dedicated specifically to disability issues and, as Sanders’s explained in the responses to The Mighty’s questions, he has included the disability community in his plans for America’s health care. Here’s what Sanders’ presidential campaign had to say: How do you plan on lowering medical costs for people with disabilities and chronic illnesses? Bernie Sanders believes health care isn’t a privilege — it’s a human right. That’s why he’s always fought for Medicare for All, a single-payer program that will guarantee comprehensive health care coverage to everyone in America. Under our current broken system, 11 percent of people with disabilities are uninsured. One-third of adults with disabilities ages 18 to 44 skipped receiving the care they need because of cost. One-fourth of adults with disabilities did not have a check-up in the past year. Under Medicare for All, everyone is covered. There are no premiums, no co-pays, no deductibles, no networks, no surprise bills. Health care will be free at the point of service. Medicare for All ends the institutional bias in our system and provides home-and community-based long-term services and supports to all people without waitlists or asset or income restrictions as well as: Covers medical devices and assistive technologies. Ensures no one in America pays over $200 a year for the medicine they need by capping what Americans pay for prescription drugs. Bans Medicaid Estate Recovery. Provides transportation for individuals with disabilities to receive the care they need. Mental health care, under Medicare for All, will be free at the point of service, with no copayments or deductibles which can be a barrier to treatment. Require an evaluation of health disparities, including geographic disparities, and a plan for addressing the disparities found in the evaluation. And create an Office of Primary Health to figure out how to increase access to care, including how to train the workforce we need to address these disparities. When Bernie is in the White House, we’re going to bring down the outrageous costs in our health care system by eliminating the profits of giant pharmaceutical and insurance companies. We’re going to bring down costs for hospitals and doctors by replacing the administrative paperwork bloat of our current insurance system with a single payer — Uncle Sam. And we’re going to make massive corporations like Amazon, who didn’t pay a nickel in federal income tax last year, pay their fair share. How do you plan to protect patients with pre-existing conditions and ensure they have access to affordable, high-quality health care? Bernie believes that health care is a human right and has fought consistently to end the despicable practice of denying people coverage based on pre-existing conditions. No one should lose health insurance coverage due to a pre-existing condition. Our profit-driven health care system is failing our people. Our country deserves better. It’s time to end a system that lets insurers make money by denying care to people with disabilities. That is why, under Medicare for All, every person will have comprehensive coverage that cannot be taken away or changed based on the status of their health. Furthermore, his Medicare for All plan will address the disparities in our system for people with disabilities that we still see in our country. Specifically, his plan requires the Department of Health to conduct an evaluation of health disparities, and to submit a plan to Congress for addressing the disparities found in the evaluation. It also creates an Office of Primary Health to increase access to care, including training the workforce we need to address these disparities. Finally, his Medicare for All plan includes explicit language that bans providers from discriminating against patients, including discrimination based on race, color, gender, and disability and allows courts to award damages to patients if this is violated. He will make sure every person gets the care they need. How do you plan to improve or change mental health care in the U.S., including access and affordability? We are experiencing a crisis in mental health treatment in this country. Bernie’s Medicare for All plan would address this crisis by providing comprehensive coverage for mental health and substance abuse treatment services as well as prescription drugs. Mental health care, under Medicare for All, will be free at the time of service, with no co-payments that can be a barrier to treatment. Furthermore, Bernie firmly believes that no one should have to choose between being taken out of their homes and communities or being denied the support they need to survive and thrive. Bernie is committed to fulfilling the promise of the Olmstead decision by ensuring that all people with disabilities have access to both home and community-based services, mental health care, and accessible, affordable housing to ensure they can enjoy their right to live in the community. In a Bernie Sanders administration, the Olmstead decision will be vigorously enforced through the Department of Justice Civil Rights Division, reversing the Trump Administration’s disgraceful rollback of disability rights enforcement. What is your perspective on pain medications (especially opioids) for those with chronic pain and how does that fit into your health care plans? Roughly 50 million Americans struggle with chronic pain. Bernie will ensure they get the treatment they need by passing Medicare for All to guarantee health care as a human right. At the same time we address the addiction crisis in this country, we must cover the full range of pain management treatments including pain medications for people struggling with chronic pain and offer the option of evidence-based alternatives when appropriate. When Bernie is President, we will: Pass Medicare for All to provide pain management care and treatments to everyone with chronic pain issues. Under Medicare for All, we will stop the pharmaceutical industry from ripping off Americans by making sure that no one in America pays over $200 a year for the medicine they need by capping what Americans pay for prescription drugs. We will follow CDC guidance on pain management to ensure people with chronic pain receive the medication they need, and offer the option of evidence-based alternatives when appropriate. And we will educate providers on evidence-based best practice treatment options for chronic pain conditions. Make significant investments in funding for addiction treatment, recovery, prevention, and research. When we are in the White House, we will provide communities across the country struggling with the epidemic of addiction with the money and resources they need to address this issue while ensuring people receive the pain medication they need. And we need to remove the greed and profit motive from pharmaceutical companies, who willfully ignored the risks of misuse and hold those responsible accountable by passing the Opioid Crisis Accountability and Results Act. This bill will prevent illegal distribution of opioids and large unreasonable number of opioids from flooding rural communities and states, hold CEOs of drug companies criminally liable for illegal advertising, marketing, or distribution of opioids, penalize drug manufacturers who do not comply with the new regulations by eliminating patent exclusivity and require federal funds received by the company to be reimbursed to the government, and create and enforce fines on drug manufacturers who are found liable for worsening the opioid crisis. How do you plan on continuing to prioritize the needs of the disability community if you are elected? When Bernie is in the White House, he will champion the rights of people with disabilities. As a nation, we have a moral responsibility to ensure that all people with disabilities have their rights protected. We will guarantee people with disabilities the right to live in the community; truly integrated employment that pays a living wage; affordable, accessible housing; and the right to health care, including mental health care and home and community based services and supports. We will reverse the criminalization of disabilities and ensure the immigration and citizenship process is fully accessible to people with disabilities. We will guarantee safe and accessible transportation for people with disabilities; we will increase educational opportunities for persons with disabilities, including an expansion in career and technical education opportunities to prepare students for good-paying community; we will protect and expand SSDI and SSI and eliminate the SSI asset test; we will ensure no person with a disability experiences discrimination or barriers to living a full and productive life by fully enforcing the Americans with Disabilities Act; we will ensure people with disabilities have full access to the internet; we will ensure justice for people with disabilities to recover from, and prepare for, the climate impacts; and we will ensure that ensure every voter has access to accessible, private, and expansive voting options. When Bernie is in the White House, we will return to a government of, by, and for the people – not the billionaires and giant corporations. We will not have former corporate executives, big donors, and lobbyists in our administration. Instead, we will ensure people with disabilities are well represented in the administration and that everyone working in a Sanders administration makes it a priority to fight for the rights of people with disabilities in every aspect of their lives, from the right to affordable and accessible housing; to a livable wage by ending the subminimum wage and increasing the minimum wage to at least $15 an hour; to a complete high-quality education; and to comprehensive health care as a right – including mental health care, home- and community-based services and supports. As President, Bernie will create a National Office of Disability Coordination focused on coordinating disability policy making to advance the full inclusion of people with disabilities, including ensuring every aspect of our public resources are ADA compliant and that the civil rights of people with disabilities are enforced. This office will be run by a person with a disability. Every person with a disability deserves the right to live in the community and have the services and supports they need to pursue the American Dream. This right must be available to all, free of waiting lists and means tests. It is our moral responsibility to make it happen. What disability-related questions do you want to ask 2020 presidential candidates?

Community Voices
Community Voices

Overwhelmed


#52SmallThings
Am having trouble figuring out where to start. Just learned I suffer from CEN- childhood emotional neglect, codependency- stemming from the CEN, and just yesterday that I was parentalized- meaning I took it upon myself to be an adult as a child to create a safe zone for myself. I’m pretty sure that’s linked to the CEN too. I’ve learned I need to be more positive - but HOW do you do that when you’re feeling depressed, unloved and worthless? I have so many thing to begin working on, I can’t even focus on one. I’m reading Running on Empty for the CEN, but am feeling like I’m getting no where. Am trying to do the activities but am struggling to do even the basics- identifying my feeling/emotions let alone work through them. Any suggestions beyond take it one day at a time and keep going?

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Rare Disease Survivor Designs Limited-Edition T-Shirt for Target

Target’s popular kid line Cat & Jack just got another limited edition T-shirt, this time designed by a girl who survived a rare blood disorder and is now in treatment for cancer and wants to spread a little extra (adaptive) joy. Hallie Barnard is an 11-year-old Texas native on a mission. At 6 years old, she started a nonprofit, Hallie’s Heroes, to encourage people to join the bone marrow donor registry. Barnard was diagnosed with Diamond-Blackfan anemia (DBA) at 13 months old, a rare disorder that primarily affects the bone marrow and prevents it from producing enough red blood cells. The treatment for DBA is a bone marrow transplant. In addition to finding her own bone marrow match at 10 years old, Hallie’s Heroes helped match 105 other people to date as well. While Barnard’s bone marrow transplant was successful — and her DBA cured — she was diagnosed with cancer in her thigh bone within a month. According to the U.S. National Library of Medicine, DBA can increase your risk for developing bone marrow cancer or a bone cancer called osteosarcoma, the cause of Barnard’s cancer. Barnard recently had her leg amputated to remove the cancer and is still in treatment. Over the summer, however, Barnard teamed up with designers from Target to spread her advocacy work further with a limited-edition T-shirt. The tag-less T-shirt, which Barnard designed in conjunction with designers from Target’s Pillowfort and Cat & Jack brand teams, features a sloth graphic based on a picture Barnard drew, styled with sequins. While onsite, Barnard also provided insight to Target’s design teams on how to make their products more adaptive, accessible and sensory-friendly for other kids with health conditions or disabilities. “Target’s work with Hallie is about much more than a single t-shirt,” a spokesperson told The Mighty via email. “She’s experiencing what it’s like to be a designer at Target and is inspiring Target’s design team to find more and new ways to create sensory-friendly and adaptive offerings that are both fun and functional for even more children.” Target, through products such as Cat & Jack’s sensory-friendly uniforms and adaptive clothing, Pillowfort’s sensory-friendly home products, and adaptive Halloween costumes, continues to show a commitment to making products that are accessible to kids with a variety of needs. Other brands, like Tommy Hilfiger, Nike, Zappos and Kohl’s have also expanded their adaptive product lines in recent years. The growing commitment to adaptive clothing is also a wise business decision: A 2018 American Institutes for Research report found people with disabilities between the ages of 16 and 64 had a combined $490 billion in disposable income to invest in companies working to create accessible products. Plus, a move toward universal design benefits everyone. “Good designs can benefit everyone,” wrote Jordan Davidson, The Mighty’s managing editor. She added: Take tags, for example. Have you ever bought a shirt and found the tag to be hopelessly itchy? Most adaptive clothing for people with sensory sensitivities forgo tags. The size, materials and washing instructions are stamped inside the shirt. No more itchy tags. Everyone wins. … We don’t have to call it adaptive fashion — it can just be fashion. Barnard’s father, Jesse, is a Target team member, which is how Barnard’s story and advocacy work popped up on the company’s radar. Along with the launch of Barnard’s T-shirt, Target will donate $10,000 to Hallie’s Heroes to continue helping others find bone marrow donors and support the organization’s advocacy work. Barnard’s limited-edition sloth T-shirt will be available while supplies last on Target’s website and in two Texas stores — one in Denton, Texas, and the other in Flower Mound, the Barnards’ local stores. The T-shirt is available in sizes XS to XL and costs $10.

Community Voices

How are you doing today? #CheckInWithMe

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Erin Migdol

7 Things Everyone Experiencing Medically-Induced Menopause Should Know

For most people who get periods, menopause may seem like a far-off cloud on the horizon — an unpleasant experience we all know we’ll go through someday, but until then, it’s easier not to think too hard about it.Menopause is the term for the time when your body starts producing less estrogen, which causes you to stop menstruating. It usually starts in your 40s or 50s. If you have an illness that affects your reproductive organs, however, your treatment might cause menopause earlier than normal. This process is called medication-induced menopause (or treatment-induced menopause), and it can be a confusing, frustrating experience, made more difficult by the fact that it piggybacks on top of your other medical issues.There are a few ways medical treatment could induce menopause. One way is to have surgery to remove your ovaries, which is called oophorectomy. If both your ovaries are removed, you will enter menopause. Or, you could undergo treatment that prevents your ovaries from working correctly and producing estrogen, thus stopping you from ovulating and having a period.Some reasons for either of these scenarios could be: Oophorectomy to treat cancer, such as ovarian cancer Oophorectomy to treat benign ovarian tumors or cysts Chemotherapy or radiation to treat cancer, such as breast cancer, uterine cancer and ovarian cancer — these treatments can damage your ovaries and alter your hormone levels, causing your period to stop. This is sometimes referred to as “chemopause.” Hormonal treatments — these treatments block the activity of estrogen or block the ovaries’ ability to produce estrogen, to treat conditions like hormone receptor-positive breast cancer, which is stimulated by estrogen or progesterone. Deciding to undergo treatment-induced menopause can be a scary experience, and fill you with more questions than answers. We spoke to Leena Nathan, an OB/GYN at UCLA, to answer some of the most common questions you might have about surgical or medication-induced menopause. 1. Is medically-induced menopause permanent? If you have your ovaries removed via surgery, you will permanently be in menopause. However, if chemotherapy or radiation or other treatment puts you in early menopause, once you stop that treatment your menopause may actually end. Nathan said it’s difficult to predict exactly which patients might stay in menopause and which don’t.“I’ve definitely seen patients, especially breast cancer patients who undergo chemo, kind of go through a menopausal phase, and then their period does come back,” Nathan said. 2. What are the long-term health risks associated with medically-induced menopause? Without estrogen in your system, you may experience a few different long-term side effects. One is decreased bone health. Estrogen helps promote bone growth and health, so without ovaries to produce estrogen, you may develop osteoporosis (reduced density and strength of bones). Another potential side effect is heart disease, since estrogen may play a role in keeping arteries and blood vessels flexible.Because of these long-term health issues, and the unpleasant side effects of menopause itself, the decision to undergo medically-induced menopause should not be taken lightly. Before treatment begins, you should talk with your doctor about how necessary it is and if there are other options you can try instead.“There are very few conditions where we would really want to put a patient into menopause long-term,” Nathan said. 3. How will treatment-induced menopause affect my fertility? Another long-term side effect of menopause is decreased fertility. As you would expect, if you are permanently in menopause, you are no longer ovulating, so you cannot get pregnant naturally. Even if your menopause turns out to be temporary, you may have decreased fertility.If you want to get pregnant in the future, talk with your doctor before treatment starts about what you can do to preserve your fertility. This may include freezing your eggs or using a donor egg and then using in vitro fertilization or surrogacy to carry the fertilized egg to term. 4. Is medically-induced menopause a cure for endometriosis? Endometriosis is a painful chronic condition caused when tissue similar to the lining of the uterus is found outside the uterus, such as on the fallopian tubes or colon. Surgery to remove the ovaries and/or uterus (removal of the uterus is called a hysterectomy) may be suggested as a possible treatment for endometriosis. However, neither of these procedures are a guaranteed cure. Hysterectomy will stop you from getting a period, but if you still have your ovaries, you will not go through menopause. Your endometriosis could still come back even if you don’t have a uterus or ovaries.“If we’re doing something to shut down a woman’s ovaries for endometriosis, it’s usually just temporary to try to stabilize the disease, and then figure out a different way to treat it,” Nathan said. 5. Are the symptoms of treatment-induced menopause the same that you would experience with natural menopause? Unfortunately, you can expect to experience the same symptoms you’ve heard older women going through menopause talk about. Even though your menopause is medically-induced, you are still experiencing the same hormone drops that other women in menopause are experiencing. These symptoms can include: Hot flashes, redness and sweating Irritability and mood changes Weight gain Irregular periods Insomnia Vaginal dryness 6. How can I cope with the symptoms of menopause? Menopause symptoms can last for years, and as any of your older relatives can tell you — they’re notoriously challenging. But there are a few strategies you can try while you ride it out. Hot Flashes Nathan said the most effective way to treat hot flashes is through hormone replacement therapy, which is medication that gives back some of the hormones that decrease during menopause, such as estrogen and/or progesterone. Another option is the SSRI class of antidepressants — some of these medications may help with hot flashes. Herbal remedies such as black cohosh and soy isoflavones can also mimic estrogen.However, check with your doctor before trying any of these treatments. Depending on your illness, you may not want any extra estrogen — for example, people who have had a type of breast cancer that is stimulated by estrogen should not take more estrogen. Insomnia Over-the-counter sleep medications and prescription medications may be considered (with a doctor’s approval), Nathan said. In addition, alleviating hot flashes can also make a big difference in the quality of your sleep.Exercise and making an effort to reduce your stress can also help with sleep issues and improve mood swings. Vaginal dryness One thing to consider is a topical form of estrogen that is applied directly to the vaginal tissue. Again, if you are actively treating breast cancer and cannot take extra estrogen, this method isn’t for you. Another option is using lubricants or even natural products like coconut oil. Irregular Periods Irregular periods are tough to manage — it’s common during menopause to skip periods and not know when the next one is coming. Nathan said there isn’t much you can do to smooth out irregular periods, but if you don’t want to carry children in the future, one potential option is endometrial ablation. During this procedure, the lining of the uterus is burned off. Nathan said about 60% of women will never have a period after that.Hormone therapy like estrogen and progesterone can also help control irregular periods, but again, if your condition could worsen by taking hormones, this won’t be an option. 7. How can I cope with the stress and uncertainty of treatment-induced menopause? Menopause is a challenging time for anyone, so having a support system is crucial. Find people who give you a shoulder to cry on, help you laugh through the most ridiculous hot flashes, and remind you that you’re still you, even though you’re going through “the change.”“All I know is that you have to find the crew that will rally around you when sh*t gets thick,” Abby W. told The Mighty. Check out these articles for more about living with menopause and chronic illness: 5 Tips From a Menopausal 25-Year-Old We Need to Talk About Menopause Why Everyone Should Understand the Correlation Between Hormones and Seizures