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New Stem Cell Trial for People with Secondary Progressive MS

Exciting news about an initial trial by an international team to transplant nerve stem cells directly into the brains of 15 people with secondary progressive MS and found that this strategy appeared safe and has the potential to stop MS progression and promote tissue regeneration. More research is needed, but exciting research. Have you participated in MS research? What type? What are your thoughts about stem cell research and trials?

Here’s some additional information about stem cells and MS.

Ask an MS Expert: Stem Cells in MS

Ask an MS Expert: Stem Cells in MS

Many types of stem cells have the potential to slow MS disease activity and repair damage to the nervous system. Join Ask and MS Expert to hear from Dr. Jeff...
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What’s a health goal you set but find it challenging to implement?

Making health goals can create a roadmap for you to follow when you’re looking to make decisions about your well-being. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control.

What’s a health goal you set but find it challenging to implement?

#KidneyDisease #Caregiving #Parenting #RareDisease #Transplant #PrimaryHyperoxaluriaType1 #CheckInWithMe

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How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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Hi my name is April. I was diagnosed with Undifferentiated connective tissue disease 14 years ago. I've recently in the past 5 years have been diagnosed with interstitial lung disease and I'm being considered for the lung transplant list. I joined this group so I can learn more about invisible diseases that we all live with everyday. Thank you for accepting my request and I look forward to interacting with all of you.

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What do you find most challenging about understanding lab tests and results?

There are many lab tests your doctor can perform to diagnose and track the progression of your primary hyperoxaluria type 1 (PH1). But sometimes it can be challenging (or feel impossible!) to understand lab test results even when your doctor walks through them with you, leaving you feeling confused or frustrated.

What do you find most challenging? Share your experiences or tips with us in the comments below. ⬇️

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What information or input is important to you when starting a new PH1 treatment?

If your doctor prescribes a new-to-you primary hyperoxaluria type 1 (PH1) treatment, what’s important for you to know before you start taking it?

Maybe you receive the majority of your medical information from your doctor, and defer to their recommendations about possible treatment options. Maybe you would prefer to talk to your loved ones about your options, or perhaps you look to the experiences of other patients who have already tried the medication you are considering.

Share what’s important to you in the comments below. There’s no wrong answer!

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What’s on your health to-do list this week?

Living with a kidney disease like primary hyperoxaluria type 1 (PH1) means that taking care of your health can often feel like a full-time job. Maybe you are making phone calls to your medical team, paying bills, requesting medical records, scheduling an appointment, or picking up medication at the pharmacy.

What do you need to get done this week?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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Broken Hearted in Nevada: Julie's Story

Part 1 of 2 Congenital heart defects are the most common birth defect in humans, affecting 1% of the world’s population. In the United States alone, 40,000 babies are born with CHD every year.1. Of those babies, about 25% will have a critical CHD, requiring surgery in the first year of life. There is no cure.

In the last few decades, advances in surgical techniques and research mean that today, about 95% of those born with non-critical CHD and 69% of those born with critical CHD will live to see adulthood. Those medical advances were largely in the pediatric space and focused heavily on survival.

In recent years, estimates show that over 1.4 million adults are living with CHD in our country. But for this population, the U.S. medical system is woefully underprepared to treat them. You may have seen stories from actors, politicians, or athletes living with CHD who seem to have no issues receiving appropriate care, but what about everyone else?

Meet Julie, a 53-year-old woman living with critical congenital heart defects. She is a daughter, twin sister, and loving mother. Julie has miraculously outlived every grim prediction doctors made in her early childhood, despite the odds being overwhelmingly stacked against her.

For babies like Julie, born with congenital heart defects between 1970-1974, the biggest hurdle was surviving the first year of life. If they did reach their first birthday, the chances of surviving to adulthood were just 77-83%.

Heart surgery on infants did not become commonplace in the United States until the early 1970s. After a year of infant CHD surgery at Boston Children’s Hospital in 1972, surgeons had some data to work with. They realized that babies with critical CHD who died generally did so in the first few weeks of life. The rest of that decade saw a shift from surgery in infancy to surgery in the newborn period for these babies, with the first successful procedure coming in 1983 on an 11-day-old.

Julie had her first open-heart surgery at the age of 5 1/2 in 1976. Her childhood was filled with summer vacations, school, birthdays, and lots of visits to the pediatric cardiologist. Because there were no specialists for adults with congenital heart defects until 2015, Julie continued to see her pediatric cardiologist as an adult. Her heart remained stable until her mid-20s.

In 1995, at age 25, Julie gave birth to a beautiful, healthy baby girl. Researchers had barely begun to study adults with CHD and no one told Julie she should have additional cardiac care and monitoring during pregnancy (probably because they didn’t know yet). Standards of care for adults with CHD were not issued until 2008 with the next update coming in 2018.

After the birth of her daughter, Julie’s heart really struggled. By age 26, in 1996, she was back in the hospital for her second open-heart surgery. There was no road map for Julie’s medical team to follow and they were dealing with a long list of heart-related issues in her body. Not to mention, Julie lived in Nevada, where the healthcare system could barely serve its healthy population.

The surgery did not go as planned and took far longer than anticipated. As the procedure entered its seventh hour, extensive bleeding and the length of time on the bypass machine forced the surgeons to place Julie into a coma, with an open chest. She wouldn’t wake up for almost two weeks.

What happened during her 13-day coma is largely unknown. Medical records were not easy to access, and communication from doctors to family members was limited. Julie woke from the coma completely paralyzed on her right side, unable to hold, feed, or care for her young daughter. She didn’t know it at the time, but this would be a turning point for her health.

Facing yet another uphill battle in her young life, Julie persevered and recovered function on her right side with months of intensive therapies. She would go on living life, raising her daughter, and continuing to follow up with her pediatric cardiologist.

As she aged, additional health conditions arose and everyday tasks became more difficult. Julie could feel that something was happening in her body, but unfortunately, Nevada still did not have any adult CHD specialists that could investigate. Despite the herculean efforts of her pediatric cardiologists, Julie declined into heart failure and would require a full evaluation by a specialized adult CHD center.

The team at UCLA’s Adult Congenital Heart Disease Center confirmed Julie’s heart failure diagnosis, but she was blindsided by the severity of her disease. Without knowing they even existed, Julie never had the chance to use the ACHD care standards for her anatomy, and was now looking at evaluation for a heart transplant.

If Julie’s life were a feature film, it

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Broken Hearted in Nevada: Julie's Story

Part 2 of 2 would have been at that moment when the screeching tires sound filled the room. A heart transplant?!

While processing that earth-shattering news, Julie was reminded that her home state did not perform heart transplants. In fact, with only one transplant center, Nevada could only perform kidney and liver transplants. She would have to leave her home, her family, and her support system to survive. And she is not the only one in this terrible position.

In October of last year, UCLA physicians told her there was no more time.

Read the full story: Broken Hearted in Nevada - A+J Patient Advocacy

Broken Hearted in Nevada - A+J Patient Advocacy

Julie was forced to leave home in order to receive life-saving care. She is truly fighting for her life with every heartbeat.
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Why are we accepting poor infection control?

While I am thrilled that the pandemic phase of Covid 19 is over, the complete lack of infection control in medical settings is nothing for anyone vulnerable to Covid 19 to feel happy about.  I was born without a whole immune system.  What I have is a rare antibody deficiency disease.  I don’t make enough antibodies to fight infection normally.  It’s easier for me to get sick, I can become sicker from infections, and I do not always have a normal vaccine (or antibiotic) response.  Avoiding infections is a crucial part of my staying healthy.

I caught covid last July from a routine doctor’s visit.  I had 4 doses of vaccine, I wore a properly fitted mask and I did not remove it for even a second.   There were no other patients in the office.  The waiting room was empty but I sprayed my pocket-sized Lysol anyway.  I was immediately taken into an exam room by an unmasked assistant.  I sprayed the exam room a total of 3 times with Lysol as I waited for my doctor.  Any more than that would have been overpowering.   My doctor wore a mask and everything went well so my visit was brief.  When I left used hand sanitizer until I got home and washed my hands.   48 hours later my symptoms began.

My point in telling how I caught covid is not to debate vaccines, or masks but to be clear that I went above what most patients do to avoid infection during a doctor’s visit.  My mini bottle of Lysol is seen as a bit brazen by most standards.   I am unable to avoid infection all by myself.

I currently live with a handful of chronic conditions.  Each condition has its own specialist.  How am I supposed to get through all my appointments without getting sick?  Covid is still circulating all year round and the vaccines don’t do much to prevent infection.  I am up to date on my boosters and I still mask indoors, but I know it’s not enough.  And so I am delaying my appointments and routine tests and care as much or even more now than I was during the pandemic.  I have health insurance but I don’t have full access to my healthcare unless I want to be sick all the time,  risking the health I have fought so hard for my entire life.

I am sharing this today because of even worse stories I have been hearing lately.  One was by a distraught wife whose husband was in the ICU and had a lung transplant.  She and her family were wearing a mask to visit her husband but the hospital staff caring for him were not!   And this is why I am speaking up today.

It’s not just people with rare diseases like me who may be vulnerable to covid.  The elderly, organ transplant patients, cancer patients and others with existing conditions are all more likely to have problems from covid.  But let’s be honest here.  Covid is not healthy for anyone.  It’s inconvenient for everyone and so it is understandable that most people don’t want to take precautions.  However, an ICU is not a pizza parlor, mall or movie theater.    Hospitals exist to help people get well.  Anyone requiring ICU care is very sick and under no circumstances should anyone be careless with their health and safety.  Maskless medicine when working with with at-risk patients is wreckless & sloppy.   Why as patients, as human beings are we accepting sloppy medicine?

Even aside from covid what about all the other respiratory infections- RSV, Flu, and Strep throat?  So many infections can be passed to patients by healthcare workers before they have symptoms.  Better infection control protocols have been desperately needed.  Hospital-born infections have always claimed lives.  When as patients are we going to demand better care?

My condition is rare but it affects 250,000 Americans.  If you add HIV patients, cancer patients, our elderly, all our immune-compromised & Immune suppressed we are not a small group.  What we need is for our patient organizations that represent us to speak up.  We deserve patient-centered care that does all it can to avoid harming us while treating us.  All human beings can benefit from better infection control in medical settings.  The idea of preventing the spread of respiratory viruses in healthcare settings may seem radical, but if we look back to the early 1800’s expecting your doctor to wash his hands would have been controversial.  Medicine has come a long way since then, but Covid has taught me we still have so much further to go.

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