Down syndrome diagnosis – Nova Scotia Down Syndrome Society http://www.novascotiadownsyndromesociety.com/ Fri, 30 Sep 2022 14:46:24 +0000 en-US hourly 1 https://wordpress.org/?v=5.9.3 https://www.novascotiadownsyndromesociety.com/wp-content/uploads/2021/07/icon-2021-07-30T230350.091.png Down syndrome diagnosis – Nova Scotia Down Syndrome Society http://www.novascotiadownsyndromesociety.com/ 32 32 Walk in the Bay Area to raise funds for Down Syndrome Awareness and Programs https://www.novascotiadownsyndromesociety.com/walk-in-the-bay-area-to-raise-funds-for-down-syndrome-awareness-and-programs/ Fri, 30 Sep 2022 12:31:51 +0000 https://www.novascotiadownsyndromesociety.com/walk-in-the-bay-area-to-raise-funds-for-down-syndrome-awareness-and-programs/ A group of 250 Bay Area residents who find common ground in having family members with Down syndrome hope to raise awareness and funds for their programs with the 13th annual Step Up for Down walk on 8 October at League City. The president of the nonprofit Galveston-Houston Families Exploring Down Syndrome (GHFEDS), Jennifer Vincent […]]]>

A group of 250 Bay Area residents who find common ground in having family members with Down syndrome hope to raise awareness and funds for their programs with the 13th annual Step Up for Down walk on 8 October at League City.

The president of the nonprofit Galveston-Houston Families Exploring Down Syndrome (GHFEDS), Jennifer Vincent de La Porte, said she was initially devastated when she received the prenatal diagnosis that her daughter, Alexandra, 26, had both Down syndrome and a congenital heart. default. However, she grew to embrace her daughter as a great blessing.

“I have an amazing life because of her,” Vincent said. “I’ve met so many amazing people and I’m able to meet and connect with people from so many different backgrounds.

“Did I grieve? Absolutely,” she said of when she was diagnosed with her child. “The fact that she wasn’t going to be a neurotypical child was devastating, but none of us are perfect. God gave us this child and she’s just as lovable as any other.

The walk will take place from 9 a.m. to noon in Walter Hall Park at 807 Texas 3 North along Clear Creek. Walkers can register on the day of the event, says Vincent. The best teams will be rewarded.

Registration is $20 for ages 13 and up, $15 for ages 12 and under, and free for people with Down syndrome.

The group’s goal is to raise $45,000 for purposes including educational meetings, social activities, a summer program, scholarships and outreach, Vincent said.

The event will feature free activities including rock climbing, inflatable rides, a clown and face painting. Also planned are a trackless train, an ice cream truck, cheerleaders and “Star Wars” characters. Snacks, water, popcorn and cotton candy will be available.

Another GHFEDS member, Lisa Owen from Galveston, overcame the shock of the first news that her son had Down syndrome.

“I knew it in utero. I learned very early, around 12 weeks, and it was devastating because I didn’t know about Down syndrome,” she said. “The unknown was scary and depressing, but my life is blessed.”

She said she was grateful for every day spent with her son, Owen Rawls, who recently turned 17.

“He’s my hero. He’s loving, happy and cuddly,” Owen said.

Likewise, Owen said, his daughter, Sydney Rawls, 19, has been a big help with her brother.

“She’s co-parenting with me,” said Owen, a single mom who owns a Kemah business. “Sydney stepped up from the start. Owen has always been very active and very independent; he would see something and walk away and run away. So Sydney would catch up with him. Owen was a bit non-verbal when he was younger; so that Sydney communicates for him. She is a godsend.

Owen’s son was 3 when they joined GHFEDS, which serves the area including South Houston, Pearland, Pasadena, League City and Galveston.

The group’s mission, according to its website at ghfeds.org, is to “provide support and resources for people with Down syndrome and their families and to promote awareness, understanding and inclusion in their communities”.

Snacks, water, popcorn and cotton candy will be available at the walk.

“We will have vendor tables, a performance by Special String athletes, a DJ and a dance floor,” Vincent said.

For more information, call 281-736-8008 or visit ghfeds.org.

Don Maines is a freelance writer who can be contacted at donmaines@att.net

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Justin Brown — Latest Stories — Pain News Network https://www.novascotiadownsyndromesociety.com/justin-brown-latest-stories-pain-news-network/ Mon, 26 Sep 2022 14:22:42 +0000 https://www.novascotiadownsyndromesociety.com/justin-brown-latest-stories-pain-news-network/ Help with fundraising The cost of each week of treatment — around $3,000 — is usually not covered by insurance, which doesn’t make it easy for Justin or his family. If anyone knows, it’s Philip Robert, one of Spero Clinic’s CRPS patients in 2016. Robert spent ten weeks at the clinic and found his recovery […]]]>

Help with fundraising

The cost of each week of treatment — around $3,000 — is usually not covered by insurance, which doesn’t make it easy for Justin or his family. If anyone knows, it’s Philip Robert, one of Spero Clinic’s CRPS patients in 2016.

Robert spent ten weeks at the clinic and found his recovery so miraculous that he was inspired to start the Burning Limb Foundation, a non-profit organization whose mission is to raise funds to provide financial relief to those affected. of CRPS, primarily for treatment at the Spero Clinic. . What sets the foundation apart from most other nonprofits is that 100% of the donations it receives are applied to the processing fee. And unlike other fundraising platforms like GoFundMe, donors can then deduct it as a charitable donation on their tax returns.

“The idea is to start (CRPS patients) – get them seed money – so they can then fundraise in the nonprofit world,” Robert says. “We provide a platform where families can use their resources – their network of friends and family – who may be willing to give a little more.”

It is through the Burning Limb Foundation that Justin has received much-needed financial support from family, friends and even people who have never met him but want to play a part in his recovery. .

It is this recovery that Justin realizes is so important, not only to living a pain-free life, but also to inspiring others like him who suffer from CRPS. Although he is not cured of the disease, he hopes his remission can bring hope to others.

“If it can work for me, it can work for anyone,” Justin says. “It’s not guaranteed to work for everyone, but it can work for anyone.”

Miles Ryan Fisher is the Deputy Director of the National Building Trades Medical Screening Program and also sits on the Advisory Board of Columbia Lighthouse for the Blind. Her articles have appeared in The Washington Post, Philadelphia Inquirer, Washingtonian Magazine, Motherly and Go World Travel.

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Eastern Iowa Families Strive to Increase Awareness and Include Down Syndrome https://www.novascotiadownsyndromesociety.com/eastern-iowa-families-strive-to-increase-awareness-and-include-down-syndrome/ Fri, 23 Sep 2022 21:56:00 +0000 https://www.novascotiadownsyndromesociety.com/eastern-iowa-families-strive-to-increase-awareness-and-include-down-syndrome/ CEDAR RAPIDS, Iowa (KCRG) – Two eastern Iowa families are spreading a message of inclusion after having children with Down syndrome. They say they hope to change the stigma often associated with the diagnosis. Cal Rivera, 2, of Iowa City, is full of love. His mother says he has never met a stranger. Cal’s family […]]]>

CEDAR RAPIDS, Iowa (KCRG) – Two eastern Iowa families are spreading a message of inclusion after having children with Down syndrome. They say they hope to change the stigma often associated with the diagnosis.

Cal Rivera, 2, of Iowa City, is full of love. His mother says he has never met a stranger. Cal’s family discovered that he had Down syndrome when he was born.

“It was considered a serious diagnosis, something to mourn over. And after spending time with Cal, we felt the opposite was true and that having a Down syndrome diagnosis was one of the best things that ever happened. happened to our family,” said Katie Rivera, Cal’s mother.

Cal’s friend, Anna Kate Friedman of Belle Plaine, will be 2 years old next month. She also has Down syndrome. His family discovered him 14 weeks into the pregnancy.

“She lights up the room she’s in, and she’s funny, and she’s sassy,” said Michelle Friedman, Anna Kate’s mother.

The families met on social media and bonded through Cal and Anna Kate, both the youngest of three siblings. They will walk together on Sunday in the Hawkeye Area Down Syndrome “Step up for Down Syndrome” walk in Cedar Rapids.

People wishing to participate in the Sunday HADSA march can register online.

The event raises funds and awareness of the group that actively supports families they consider blessed with Down Syndrome. Friedman sits on the group’s board of directors.

“Just to spread inclusion and I want my daughter to live life like no other child would,” Friedman said.

Rivera is also making the case for a new narrative. She celebrates Down syndrome through clothing and her company Cal Pal and Co. It features clothing with sayings like “Almond Eyes and Chunky Thighs”, “Forget Average Be Legendary”, and the best-selling, “save the homies “.

Rivera’s long-term plan for his business is to employ several people with special needs. She has already hired her first worker with Down syndrome.

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The Era of No Diagnosis — Pain News Network https://www.novascotiadownsyndromesociety.com/the-era-of-no-diagnosis-pain-news-network/ Fri, 16 Sep 2022 19:05:31 +0000 https://www.novascotiadownsyndromesociety.com/the-era-of-no-diagnosis-pain-news-network/ By Dr. Forest Tennant, PNN Columnist Recently I received a report from a prestigious professional pain organization proposing that “back pain” is the only diagnosis assigned to this condition. They want to rule out any diagnoses like a herniated disc, arachnoiditis, sprain, strain, or rheumatoid spondylitis. Their reasoning was that pain treatment should be the […]]]>

By Dr. Forest Tennant, PNN Columnist

Recently I received a report from a prestigious professional pain organization proposing that “back pain” is the only diagnosis assigned to this condition. They want to rule out any diagnoses like a herniated disc, arachnoiditis, sprain, strain, or rheumatoid spondylitis. Their reasoning was that pain treatment should be the same for all cases of back pain, so there is no need to establish an underlying causal diagnosis for every patient.

To me, their motivation was clear. It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain. Or maybe they just want robots to take a pain complaint and apply a preconceived, non-human contact medical protocol as a treatment?

This non-diagnostic proposition goes hand in hand with the large number of articles that wish to declare pain as a disease rather than a symptom. Let’s be very clear: pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.

Certain illnesses certainly cause pain. Common sense medical practice has included, and should continue to include, a search for the root cause of an individual’s pain. In addition, emphasis should be placed on the treatment of cause of pain rather than just treating the pain symptom. Diagnosis is the process of identifying the cause of a disease, whether it is a disease, condition or injury.

My recent experience studying adhesive arachnoiditis (AA) has revealed pathetic information about the inability of some physicians to make a diagnosis. In order to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after epidural corticosteroid injection or lumbar puncture. In these cases, the individual has singularly attributed the development of AA to one of these procedures.

The startling statistic, however, is that barely a third of these people could give us the diagnosis that prompted a doctor to do an epidural injection or lumbar puncture in the first place. Lumbar punctures were usually performed in an emergency room, and only about half of these patients could even remember the symptoms that prompted the emergency visit.

One-size-fits-all treatment

A big disconnect has developed between primary care physicians, pain clinics and patients. In most cases today, a person with pain in the neck, back or extremities will first consult their primary care physician. In many cases, the physician will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causal diagnosis and develop a patient-specific treatment plan.

This is what usually happens when a primary care physician refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient-specific plan that the specialist or treating physician will follow when treating the patient.

But that rarely happens today when a primary care physician refers a patient to a pain clinic. Almost never a specific diagnosis is made, but a “one size fits all” pain treatment regimen is put in place. Or worse, the pain patient is diagnosed with “opioid use disorder” and placed on the addiction treatment drug Suboxone, even though he has been successfully maintained for years on opioids without abuse problem. The attending physician may never even see the patient again.

The result of this practice is that some pain clinics treat dozens of bona fide patients with no specific medical diagnosis other than neck, back, or leg pain, or “opioid use disorder.”

There are other unacceptable non-diagnostic scenarios these days. Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos syndrome. Patients will often get their diagnosis of an unusual illness and present it to a doctor for care, who will state that they do not accept the diagnosis.

A patient may then dare to ask: “So what do I have and what is the treatment?” It’s hard to believe, but some patients are told, “I don’t accept this diagnosis, but since I don’t have another, I can’t treat you.

Another commonly told story these days is that of the patient who complains of “pain all over” and is prescribed a long list of medications, but is not given a causal diagnosis. Some patients went to see a dozen or more doctors, but none returned a causal diagnosis.

The opioid and COVID epidemics have obscured many positive diagnostic developments that have taken place behind the scenes and greatly assist in establishing a causal diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only establish a diagnosis, but also provide a roadmap for treatment. And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made specific diagnosis of spinal canal pathologies more accessible.

Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the root cause of their pain can be addressed, as well as to relieve the pain symptom. Without addressing the underlying cause of chronic pain, the patient is often condemned to a painful life of decreasing quality until death.

Modern medicine now has the knowledge and technology to do better. Why aren’t we?

Forest Tennant, MD, DrPH, has retired from clinical practice but continues research into the treatment of intractable pain and arachnoiditis through the Tennant Foundation Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

The Tennant Foundation financially supports Pain News Network and its sponsors PNN Patient Resource Section.

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Are you bipolar or do you have premenstrual dysphoric disorder? https://www.novascotiadownsyndromesociety.com/are-you-bipolar-or-do-you-have-premenstrual-dysphoric-disorder/ Wed, 14 Sep 2022 20:32:37 +0000 https://www.novascotiadownsyndromesociety.com/are-you-bipolar-or-do-you-have-premenstrual-dysphoric-disorder/ I would normally say I’m a happy person, but the year I was diagnosed with PMDD, nothing was normal. We weren’t just in a global pandemic. My two children were going through the process of being diagnosed with autism spectrum disorders, and my eldest child was awaiting testing for a genetic disorder. When I started […]]]>

I would normally say I’m a happy person, but the year I was diagnosed with PMDD, nothing was normal.

We weren’t just in a global pandemic. My two children were going through the process of being diagnosed with autism spectrum disorders, and my eldest child was awaiting testing for a genetic disorder. When I started having mood swings, it seemed like a natural by-product of the level of stress I was going through as a single parent under those circumstances.

When the mood swings turned into suicidal ideation, I knew things were bad, but I couldn’t understand why. My impulse control didn’t seem to work, I was crying more than I’ve ever cried in my life, I was forgetting things I should have remembered, and I was exhausted all the time.

Then, without explanation, I was fine. I was better than fine. I was happy and full of energy and I couldn’t even understand what had made me so sad.

RELATED: Menstrual flu? What it really means if you have flu-like symptoms before your period

Understanding Overlapping Symptoms

With such symptoms, it’s not hard to see why so many people, especially women, are diagnosed with bipolar disorder. There are many similarities.

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The community comes together to raise funds for the Down syndrome community of W. MI https://www.novascotiadownsyndromesociety.com/the-community-comes-together-to-raise-funds-for-the-down-syndrome-community-of-w-mi/ Sat, 10 Sep 2022 12:06:48 +0000 https://www.novascotiadownsyndromesociety.com/the-community-comes-together-to-raise-funds-for-the-down-syndrome-community-of-w-mi/ BYRON TOWNSHIP, Mich. (WOOD) — October is Down Syndrome Awareness Month, but advocacy groups are starting their awareness efforts early with an event on Saturday. The Down Syndrome Association of West Michigan held its annual awareness and fundraising event from 9 a.m. to 3 p.m. at the Special Olympics Michigan Unified Sports and Inclusion Center, […]]]>

BYRON TOWNSHIP, Mich. (WOOD) — October is Down Syndrome Awareness Month, but advocacy groups are starting their awareness efforts early with an event on Saturday.

The Down Syndrome Association of West Michigan held its annual awareness and fundraising event from 9 a.m. to 3 p.m. at the Special Olympics Michigan Unified Sports and Inclusion Center, located in 160 68th St. SW.

About 1,000 people attended the fundraising walk to show their support for people with Down syndrome.

The executive director said Saturday morning that they had raised nearly $100,000. They need over $130,000 to surpass their goal.

For the second year in a row, the top fundraising team was “Fist Bumps for Callen”. The team raised $7,662 for fundraising efforts.

The money raised funds special projects, events and services for families, healthcare professionals and disability organizations.

“Welcome baskets when someone is diagnosed at the Adult Cooking and Reading Club. we even have support for families looking to adopt someone with Down syndrome and all of these programs are free for those families,” said Katie Hollis, executive director of the Down Syndrome Association of West Michigan.

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Former columnist, beloved doctor remembered for his humor and integrity https://www.novascotiadownsyndromesociety.com/former-columnist-beloved-doctor-remembered-for-his-humor-and-integrity/ Thu, 08 Sep 2022 17:34:16 +0000 https://www.novascotiadownsyndromesociety.com/former-columnist-beloved-doctor-remembered-for-his-humor-and-integrity/ Celebrations of life are filled with good stories, laughter and tears, and Dr. Terry Hollenbeck’s celebration was no exception. On August 31, friends and family, including Hollenbeck’s wife Beth, their children and grandson, came together to share their memories of Hollenbeck, who died August 2 at the age of 76. Hollenbeck had battled multiple myeloma […]]]>

Celebrations of life are filled with good stories, laughter and tears, and Dr. Terry Hollenbeck’s celebration was no exception.

On August 31, friends and family, including Hollenbeck’s wife Beth, their children and grandson, came together to share their memories of Hollenbeck, who died August 2 at the age of 76.

Hollenbeck had battled multiple myeloma cancer since her diagnosis in 2013 and had been open and honest about her battle.

As a long-time contributor to the Press banner, Hollenbeck’s beloved weekly columns were filled with information on everything health-related, from the effects of alcohol to recognizing Down Syndrome Awareness Month. As Hollenbeck’s cancer progressed, his columns often reflected on the treatment he was undergoing, and his transparency about his disease won the hearts of his readers.

From 1983 to 1987, Hollenbeck worked at Doctors on Duty on Ocean Street, where he became their medical director in 1985. In 1987, he joined the Santa Cruz Medical Clinic and helped establish their first health care satellite clinic. emergency in Scotts Valley. This is where he practiced until his retirement in 2015 after serving some 100,000 patients.

He began writing for the journal in 2008, and by 2021 had published over 250 articles, including one titled “Introducing: Dr. Terry Hollenbeck” which was published in 2017.

In this submission, Hollenbeck recounted his early years, including how he became a doctor and how his faith led him to practice medicine out of the country as a medical missionary through the Christian Medical Society. He was posted to Honduras in Central America, serving first on the Miskito Coast before moving to a small coastal town called Cocobila.

“There I helped establish a clinic and train several women to become nurses to care for the local Miskito Indian population,” Hollenbeck wrote. Later in that same post, Hollenbeck wrote, “I appreciate the positive feedback I’ve received from so many of you and intend to continue this effort for as long as I can,” a a subtle nod to his cancer diagnosis. .

In 2016, Hollenbeck was honored by the San Lorenzo Valley Chamber of Commerce as Man of the Year, and his star power in the Valley has only grown from there. A Press banner A column from the same year in which he detailed the differences between hospice and palliative care was particularly helpful to so many in our community, but it also seemed like a harbinger of things to come for Hollenbeck.

Hollenbeck’s sister, Sue Zieche, told the story of her brother, who got a summer job as a cement truck driver after graduating from high school in Wisconsin.

“He would come home and say, ‘I did a practice run, and I can’t stop this truck!’ He said it was the scariest thing he had ever done in his life. But like he did with everything else, he persevered and after that experience he thought he could drive anything,” Zieche said.

Sue’s husband, retired Presbyterian minister Bill Zieche, led the memorial service for Hollenbeck at Chaminade. Bill said he’s known Hollenbeck for 30 years.

“When my church held annual youth mission trips to the United States, Terry always joined us. Every four years we would go to Guatemala and build schools, and Terry was always interested in that,” Bill said. “After several years, our schedules finally aligned and he came with us to help us. He took another trip with a group of men who built bridges in Guatemala. He loved the camaraderie of these trips so much and he was always interested in how God was working through him.

Sue Zieche added: “Helping anyone was her passion.”

A little-known fact about Hollenbeck: He taught Sunday school for special-needs kids from eighth grade through high school.

“He loved them, they loved him and I think he lived his Christian values ​​throughout his life,” Sue said.

Lee May, who founded a number of Santa Cruz weeklies and eventually sold one of his publications to the Good time, also suffers from multiple myeloma, an incurable blood cancer that mainly affects the bones and the immune system. He was diagnosed two years before Hollenbeck.

“I can tell you that when you receive a diagnosis like this, it’s frightening and disorienting. Friends and relations find it difficult to know how to react and, frankly, the response is often well-meaning, but not good” May said. “People just don’t know what to say or how to react. Terry and I used to joke that our friends would often say ‘you look great’. We would often look at each other and say, ‘ You look great”, as a kind of joke.

Since there were no support groups in the area, Hollenbeck and May started their own. The meetings were first held in the basement of his church in Felton. Hollenbeck started each meeting by going around the room and asking everyone, patient or caregiver, “Tell us your story.

“Participants immediately realized that this was a safe space to express their trials and tribulations, their fears, their emotions and what they had learned about how to manage the disease and its treatments,” said said May. “As a result, I got more useful information from these meetings than I could ever find online. In fact, we shared some of what we learned with our doctors, educating them a bit about what relatively rare cancer, but not Terry.

“He published the news in his weekly column ‘The Valley Doctor’, in the Press banner. A newspaper sent to over 10,000 homes. In my opinion, it was an incredibly brave thing to do. And it was fortuitous for me. I was hungry for any resource to help me navigate my life. After all, the prognosis for survival at that time was 2-4 years. And this is Terry, this respected local doctor. What better resource to have.

Terry Hollenbeck
Dr. Terry Hollenbeck stands in front of his father’s office sign. – contributed

Meggie Rhodeos of Boulder Creek was fortunate to know Hollenbeck as a family friend and doctor. When her husband James was sick and in excruciating pain, they went to Scotts Valley Urgent Care and saw Hollenbeck.

“We weren’t looking for medicine, we were looking for answers and hope,” Rhodeos said.

Prior to meeting Hollenbeck, James had undergone a failed spinal fusion procedure, and no doctor wanted to help him with his chronic discomfort; they accused him of researching drugs. It was later discovered that James had MRSA (methicillin resistant Staphylococcus aureus) and bone spurs.

“During this time, Terry met James as a person and really heard his concerns. Beyond that, Terry stepped out of his role as a doctor and prayed with James to let him know there was trouble. hope beyond this pain,” Rhodeos said. “It was just what was needed. No one could tell us what would happen in the future, but it was the peace Terry gave her that was so desperately needed and appreciated.

Even during his long illness, Hollenbeck’s friends and family noted how his relentless optimism, sense of humor, and deep faith kept him in good spirits. Each memory shared at the celebration of life shed a little more light on Hollenbeck, including a story from one of their Ben Lomond neighbors, John Park.

Park had tried planting bamboo along the fence of his property, but had trouble getting the bamboo to take hold.

“I saw Terry outside almost every day, and when he asked how I was doing, I shared my frustration with the bamboo that wasn’t taking,” Park said. “One day, I was walking on my property and I stepped on the end of the shovel, which threw the handle of the tool into my head. Bleeding, I went to emergency care and waited for the doctor on call. Terry walked into my treatment room, looked over at me, and said, “It’s not about that bamboo, is it?”

Beth said her husband was a “people person.”

“He loved life and surrounded himself with great company,” she said. “Terry was a curious person and always sought knowledge and worked to be his best, always learning and growing. He was such a fun partner, best friend and confidant. He was never a boring day with Terry Hollenbeck.

In January 2021, Hollenbeck filed its final report with the Press banner. He told then-reporter Katie Evans in reference to his cancer diagnosis: “Now that I’ve been through the mainstream treatments, we don’t know what lies ahead,” he said. “Hopefully we can find other treatments and move on.”

Beth said Hollenbeck loved her children and her grandson. It was this love that drove him to fight, she added.

“Because he didn’t want to leave his loved ones and he knew we didn’t want to be without him,” she said. “In the end, it was just God’s will to bring him home. He was so tired and he knew his time was approaching. We miss him a lot, but he is cured of his illness and that brings us some peace. We carry with us his lessons, his sense of humor and his integrity. He will always be with us.”


Hollenbeck’s advice will live on in perpetuity, first on valleydoctor.wordpress.com, where his weekly columns for the press banner are archived, and in his book “House Calls: Guidance on Common Medical Topics,” available at bit.ly/3CYMgzL. In lieu of flowers, consider making a donation in memory of Terry Hollenbeck to the University of California San Francisco Stephen and Nancy Grand Multiple Myeloma Translational Initiative. To make a gift, go makeagift.ucsf.edu/grandmmti, or send a donation payable to “UCSF Foundation” to UCSF Foundation, PO Box 45339, San Francisco, CA 94145. All donations are tax deductible.

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World Leukemia Day 2022: Signs and Symptoms of Leukemia in Newborns | Health https://www.novascotiadownsyndromesociety.com/world-leukemia-day-2022-signs-and-symptoms-of-leukemia-in-newborns-health/ Sat, 03 Sep 2022 14:05:24 +0000 https://www.novascotiadownsyndromesociety.com/world-leukemia-day-2022-signs-and-symptoms-of-leukemia-in-newborns-health/ World Leukemia Day 2022: Congenital leukemia is a rare cancer that is present at birth and whose signs and symptoms appear within a month of an infant’s life. Congenital leukemia occurs in the womb even before a baby is born and can be treated with chemotherapy. Some of the symptoms that would be seen in […]]]>

World Leukemia Day 2022: Congenital leukemia is a rare cancer that is present at birth and whose signs and symptoms appear within a month of an infant’s life. Congenital leukemia occurs in the womb even before a baby is born and can be treated with chemotherapy. Some of the symptoms that would be seen in newborns with leukemia are pale skin, fever, fatigue, nosebleeds, bleeding in the brain, and anemia. Sometimes congenital leukemia also leads to stillbirth. (Also read: World Leukemia Day 2022: Dietary advice for leukemia patients to aid recovery)



“Congenital leukemia refers to the rare cancer disease that is present at birth and clinical signs appear within the first 4 weeks. Congenital leukemia is different from childhood leukemia which develops later in a child’s life. Congenital leukemia occurs in utero before birth, so while some childhood leukemias develop alongside Down syndrome, this is not common in children with congenital leukemia,” explains Dr. Sunny Jain HOD and Senior Consultant in Oncology Marengo QRG Hospital, Faridabad.

CAUSES OF CONGENITAL LEUKEMIA

The exact causes of congenital leukemia are not known, but they have been linked to maternal radiation exposure, maternal dietary exposure to bioflavonoids, maternal tobacco and illicit drug use, and hereditary diseases. such as Down syndrome, neurofibromatosis, Bloom syndrome and Fanconi anemia. . Mutations in the KMTA2A gene may be other risk factors for this rare type of leukemia.

SYMPTOMS OF CONGENITAL LEUKEMIA



“Children with leukemia may have symptoms such as pale skin, fever, fatigue, bruising, nose bleeds, frequent infections, yellowing of the skin and eyes (jaundice), enlarged spleen, enlarged kidneys, enlarged liver, enlarged spleen, enlarged liver and spleen, bleeding in the brain and anemia.In some cases, congenital leukemia can become the cause of stillbirth,” says Dr. Jain.

DIAGNOSIS OF CONGENITAL LEUKEMIA

Diagnosis of children with signs or symptoms of leukemia may be made by physical examination, blood tests, imaging tests such as CT scans and MRIs, spinal tap or spinal tap, marrow aspiration bone and a biopsy.

TREATMENT OF CONGENITAL LEUKEMIA

“Chemotherapy is recommended as the primary form of treatment for children with congenital leukaemia. Chemotherapy is considered to be effective, especially in the presence of mutations in the KMTA2A gene,” says Dr. Jain.



“To improve quality of life and reduce the risk of complications, certain supportive care techniques may be advised. These include maintaining hydration and fluid balance, monitoring liver function, and performing blood counts. frequent globular,” he adds.

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]]> Rock Haus revelers find the groove | Community alert https://www.novascotiadownsyndromesociety.com/rock-haus-revelers-find-the-groove-community-alert/ Thu, 01 Sep 2022 21:39:00 +0000 https://www.novascotiadownsyndromesociety.com/rock-haus-revelers-find-the-groove-community-alert/ “You can’t get them off the dance floor,” said Mary Helen Esqueda, chair of the Rock Haus Foundation Dance Party. Whether the DJ is playing “Macarena,” the chicken dance song, or George Strait’s “Ocean Front Property,” the feet are dancing and the crowds continue to swell every two months at a dance party at the […]]]>

“You can’t get them off the dance floor,” said Mary Helen Esqueda, chair of the Rock Haus Foundation Dance Party.

Whether the DJ is playing “Macarena,” the chicken dance song, or George Strait’s “Ocean Front Property,” the feet are dancing and the crowds continue to swell every two months at a dance party at the Village Venue in Creekside.

Organized by the Rock Haus Foundation, the dance parties offer adults with special needs a place for socialization and entertainment. The mission of the Rock Haus Foundation, a 501(c)(3), is to support the improvement of opportunities and quality of life for adults with intellectual and developmental disabilities in Comal County.

The inaugural dance took place in February this year and the dance parties continue to grow in popularity.

Esqueda is chair of the dance party and secretary of the board of the Rock Haus Foundation. She and her 20-year-old son, Vincent Esqueda, were attending dances for adults with special needs in San Marcos.

“He has a dual diagnosis of Down syndrome as a primary and autism as a secondary. He really enjoyed the dances in San Marcos. With the growth of New Braunfels, I thought we really needed to bring the dances to New Braunfels,” said Esqueda said.

Sponsors helped make the dances a reality.

Participants from Comal County and surrounding areas attend the dances with their families or caregivers, or sometimes attend solo or with dates.

Balloon arches and other decor welcome guests who are also invited to enjoy treats at the snack bar or fool around at the photo booth.

Each dance is a theme dance.

“Our last dance was Hawaiian luau themed,” Esqueda said.

Whole families dressed in Hawaiian-themed clothing. Guests participated in a limbo contest and enjoyed party favors. About 200 attended.

“They love music and they love to dance,” Esqueda explained.

The October 21 dance won’t disappoint, as it will include a Halloween theme.

“Costumes are encouraged,” Esqueda said.

In December, Rock Haus hopes to hold a banquet as part of the dance party.

“This group doesn’t have much to do in our community. It’s a few hours where they can let loose and have fun. You can just look at the joy in their eyes when they are at these dance parties. They’re really looking forward to it,” Esqueda said.

“It’s one of the ways we provide opportunities and activities for this population,” said Christine Pfaff, who serves as treasurer of the Rock Haus Foundation board. “They like to see each other regularly.”

Rock Haus also hosts vendor tables at local resource events to provide information about their services for the special needs community.

Dance parties are open to adults 18 and older with special needs, their families and caregivers in and around Comal County.

The next dance party will be from 6:30-8:30 p.m. on October 21 at the Village Venue in Creekside. Costumes are encouraged.

There is no admission fee, but attendees are asked to RSVP to info@rockhausfoundation.org or by calling 1-817-266-6833.

To learn more about the Rock Haus Foundation or about sponsoring dance parties, go to www.rockhausfoundation.org.

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Adoptee Shares Journey of Traumatic Diagnosis of Rare Autoimmune Disease – Love What Matters https://www.novascotiadownsyndromesociety.com/adoptee-shares-journey-of-traumatic-diagnosis-of-rare-autoimmune-disease-love-what-matters/ Tue, 30 Aug 2022 22:20:17 +0000 https://www.novascotiadownsyndromesociety.com/adoptee-shares-journey-of-traumatic-diagnosis-of-rare-autoimmune-disease-love-what-matters/ Live the disease early “I was born in Cambodia in 1999, in a region where many faced extreme poverty and lack of medical and financial assistance. My birth parents gave me up for adoption when I was six months old, and I was adopted when I was 1 year old. I was adopted by a […]]]>

Live the disease early

“I was born in Cambodia in 1999, in a region where many faced extreme poverty and lack of medical and financial assistance.

My birth parents gave me up for adoption when I was six months old, and I was adopted when I was 1 year old. I was adopted by a German-American family and brought to the United States in 2000. I remember my mother always telling me that I was an active toddler, and I would run around like no one was there. ‘affair. I ran so much that I got tired, then I took very long naps on the shoulder of my uncle or my grandfather. I didn’t remember those years, but I remembered the beginning of elementary school. My mother enrolled me in my neighborhood school and wanted me to join the women’s soccer team.

Courtesy of Miia Shapiro
Myasthenia gravis survivor as a baby celebrating his first birthday with a cake
Courtesy of Miia Shapiro
Myasthenia gravis survivor with white adopted family members
Courtesy of Miia Shapiro

I joined in the fall and remember being very excited about playing. But on the first day of testing, I still felt like I was running behind everyone else. Somehow I couldn’t keep up; my stamina was much lower and my stamina was very low.

My mom took me to my annual exam and asked all the standard questions, but never paid any attention to it, and frankly, neither did the doctors. I kept playing and I kept pushing myself. I thought maybe I just needed to train or move more. Maybe I just needed to do more. ‘Why couldn’t I run without feeling so tired or weak? Why did every move feel like my body just wanted to stop? I questioned him countless times but kept him inside.

It started to affect my mobility outside of sports when I was walking up stairs to class or walking down long hallways. Or participate in physical education Even simple things like bending over or getting up quickly became difficult. I stopped the sport at the age of ten and I stopped running. By then, I had lost a lot of stamina and stamina, but I was also facing a lot of mental exhaustion from bullying at school.

Depression, misdiagnoses and death

During my pre-teen years, I spent time at weight loss camp and boarding school and broke my ankle which required me to use a wheelchair for about a year or so. At the age of 14, I decided to start using a wheelchair to help me with my mobility issues. My mother, who had used a wheelchair all my life due to multiple sclerosis, was very worried and completely against it, due to her internalized ableism.

When I was 15, I was misdiagnosed with conversion disorder and sent to a treatment center. I’ve been through several different traumas and different types of abuse that I’m not free to talk about right now, but I now have complex medical PTSD.

My mother died when I was 17 and I was placed in foster care. I found out that my wheelchairs had been sold because they weren’t considered a medical necessity. I struggled for the next two years with my mobility. During this time I met a man, got into a relationship, moved on my own, dropped out of high school and had a short-lived engagement with said man…who didn’t s didn’t end very well. I was extremely depressed and my illness was getting worse. I stopped taking care of myself. I stopped worrying about waking up in the morning or falling asleep at night. I wanted it all to end. I felt so alone, like my life wasn’t meant to be lived.

I felt like not only was I not ready to be alone, but how isolated living with illness was. I realized that I couldn’t take care of myself. Just brushing my teeth or taking a shower felt like climbing a high hill.

Transform my life

It wasn’t until I met my husband, Adam, that my life began to change. We met in 2018 on a disabled dating group on Facebook, when I was 19 and he was 36. He’s also disabled, due to a spinal cord injury in 1996. We clicked instantly, and the first night we spoke on the phone, we spent five hours together. It was perfect. Adam, who lived in Sacramento, California, moved across the country to live with me in Virginia. And we’ve been together ever since.

When we first lived together, we shared my small studio (which could barely fit me). Little by little, I would let Adam into my life. I would let him take me to doctor’s appointments. I would let him help me find doctors while helping him find doctors and medical care for himself, since he had just moved. In a way, we helped each other. It was very healing for me and very healing for him.

Myasthenia gravis survivor marries husband
Courtesy of Miia Shapiro

When a doctor wasn’t working, we moped for a minute, then looked around and found others. We kept looking, but never gave up. It was sure that it was a lot on our shoulders. Mostly because I was getting weaker, quickly with no response.

Eventually I had to cheer myself up and get over some of my trauma, and I asked my family if they wanted to buy me an electric wheelchair – I was scared of what they would say, but I knew that I needed. I held on and got what I needed. My family listened to my needs and has been by my side ever since. After being in this particular wheelchair, I needed a new wheelchair because my needs were changing. I received my wheelchair (which I currently sit in as I type this) last year. Adam helped me defend it, and I paid for it entirely through insurance!

fight for me

I felt empowered when I defended myself! I did it. For the first time, I felt so heard and I felt like I could do anything. And so I pushed myself further. I decided to be my advocate to get a diagnosis.

The first diagnosis clearly on my radar was myalgic encephalomyelitis. Sometimes called chronic fatigue syndrome, but it’s not usually the same thing. I’m not sure what exactly pushed my mind towards this, but my body reacted as if the symptoms very likely matched. I experienced many symptoms and it seemed likely as there was no real test for it.

Every MRI, CAT, EMG, etc., I had ever taken had been inconclusive or considered “unremarkable”. But the only thing that was there was my long list of signs and symptoms. Also, a big indicator that I did indeed have some sort of neurological impairment – ​​the pinnacle (in my opinion), a neurogenic bladder disorder. A neurogenic bladder disorder is a disorder affecting the functionality of the ureters in the bladder, caused either by traumatic nerve injury or by diseases affecting the central nervous system.

When ME/CFS no longer seemed to make sense to my doctors and seemed to make much less sense to my husband and myself, I felt lost again. I didn’t know where to go or what to do. I thought I understood it. I thought I could rest, relax, and stop fighting to finally know what was happening to me. So that the doctors finally see me, hear me and feel me. But God, even with ME they neglected me every time I spoke. The idea was that somehow I was just overweight or just tired, and that’s why I was using a wheelchair.

Myasthenia gravis survivor in hospital bed and gown
Courtesy of Miia Shapiro
close up of myasthenia gravis survivors hospital tubes and scars
Courtesy of Miia Shapiro

Diagnosed with myasthenia gravis

I don’t know exactly what happened to make all this change, but I leave that to my spirituality. I’m so grateful for this next part…

I was visiting with my ophthalmologist who I had been seeing for many years due to spina bifida occulta related hydrocephalus. I told him about my ptosis (droopy eyelid) which I have been experiencing for several years, and it had been documented. She looked at me and said, “I think you have myasthenia gravis.

Several of my friends had told me about it years before they thought I had it. I just denied it because I didn’t think anyone would listen to me, but here was a doctor giving me his medical opinion. She looked me up and down, did a full physical and said, ‘Check your labs. I’m sure you have MG.’

Enough said Doc. I’ll take your word for it. Since then I have been diagnosed with generalized myasthenia gravis.

I live each day with gratitude because I know that my journey to get here was very long. I have no idea how it is for anyone else. I’ve been through things I wish I never had to, and I wouldn’t wish that on anyone. I will say if you find yourself in the shadow of fear and loneliness, and you are afraid to speak up, I am here to tell you to scream. Scream, let those emotions be heard and let yourself be seen because that’s the only way to get what you need. They can’t help you if you don’t help yourself.

If you or someone else is dealing with an undiagnosed diagnosis or has suffered trauma related to a misdiagnosis. Or you just need a friend. I am your sister. I’m here with you. I love you. Call me anytime, and I’ll take you home.

Myasthenia gravis survivor in black and white striped dress
Courtesy of Miia Shapiro

This story was submitted to Love What Matters by Miia Shapiro from Alexandria, Virginia. You can follow his journey on Instagram. Submit your own story here and make sure to subscribe to our free email newsletter for our top stories.

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