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Welcome to Periodic Paralysis and Covid-19

Welcome to Periodic Paralysis and Covid-19

Welcome to Periodic Paralysis and Covid-19Welcome to Periodic Paralysis and Covid-19Welcome to Periodic Paralysis and Covid-19

Up to date information for the Periodic Paralysis Community

Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19 Periodic Paralysis and Covid-19

Welcome to Periodic Paralysis and Covid-19

Welcome to Periodic Paralysis and Covid-19

Welcome to Periodic Paralysis and Covid-19Welcome to Periodic Paralysis and Covid-19Welcome to Periodic Paralysis and Covid-19

Up to date information for the Periodic Paralysis Community

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Who We Are

The Periodic Paralysis Association (PPA)  and Periodic Paralysis International (PPI) have partnered to bring the best and most up to date information to our members during the Covid-19 outbreak around the world. We support one another and our mutual membership as they struggle to live with this new epidemic. 

Experienced and Supportive

We understand that not one care plan fits all. Daily services can include anything from meal preparation, hygiene, cleaning, and help with healthcare. It also means keeping you as up to date as possible about  medical issues specific to our rare disease community. 

people you trust

This site is run by people you know. Linda Feld President of the PPA and Deb Cavel-Greant President of the PPI. We have been the sources to go for help for over 20 years and are now partnering to keep you informed.


What you need to know

Critical updates

  

Since COVID-19 is known to drop potassium levels, it's worthwhile to do *everything possible* to avoid catching the darn stuff. Hydroxychloroquine is a medication of last resort, given to C-19 patients who are on ventilators, because in the doses needed it is not without significant and for us potentially dangerous side effects, including hypokalemia, a lengthened QT interval and muscle weakness.

Health authorities are pleading with the general public to NOT ask for prescriptions for Hydroxychloroquine and asking that doctors refuse to prescribe it because it does not act a preventative, and supplies need to be preserved for those who truly need it. See the Wikipedia entry here:

https://en.wikipedia.org/wiki/Hydroxychloroquine

ZPack is a macrolide antibiotic called Zithromax or Azithromycin.

Antibiotics have no effect at all on viral infections and may make you more susceptible to catching viral illnesses because they destroy the "friendly"

bacteria which help to keep viruses in check.

Your very best defense is to stay indoors, or on your own property, and **distance yourself** from those outside your immediate household. Let one person in the family do all the shopping/errands that *must* be done and do those in a single trip.

The C-19 virus is spread mainly from person-to-person.

- Between people who are in close contact with one another (within about

6 feet).

- Through respiratory droplets produced when an infected person coughs,

sneezes *or talks*.

- These droplets can land in the mouths or noses of people who are

nearby or possibly be inhaled into the lungs.

- Some recent studies show that COVID-19 may be spread by people who are

not showing symptoms - and who never show anything more than the

"sniffles".

- Maintaining good social distance (about 6 feet) is very important in

preventing the spread of COVID-19. Do NOT go into a crowded area. Avoid

shopping in stores where people are in close contact. If possible order

online and pick up or have items delivered.

The virus can also be spread from contact with contaminated surfaces or objects.

A person can get COVID-19 by touching a surface or object that has the virus on it and then touching their own mouth, nose, or possibly their eyes. This is not the main way the virus spreads, but transmission is possible via surfaces.

CDC recommends people practice frequent “hand hygiene,” which is either washing hands with soap <https://www.cdc.gov/handwashing/when-how-handwashing.html> or water for 20 seconds at a time or using an alcohol-based hand sanitizer.

CDC also recommends routine cleaning of frequently touched surfaces.

<https://www.cdc.gov/widgets/micrositeCollectionViewerMed/index.html?chost=www.nih.gov&cpath=/health-information/coronavirus&csearch=&chash=&ctitle=Coronavirus%20(COVID-19)%20%7C%20National%20Institutes%20of%20Health%20(NIH)&wn=micrositeCollectionViewerMed&wf=/widgets/micrositeCollectionViewerMed/&wid=micrositeCollectionViewerMed1&mMode=widget&mPage=&mChannel=&cdcCollectionid=403305&cdcTheme=theme1&cdcGeotag={%27continent%27:%20%276255149%27,%20%27country%27:%20%276252001%27,%20%27state%27:%20%27%27,%20%27region%27:%20%27%27%20}&cdcDataid=404908&chashOptMode=out#!/detail/405259>

This would be wiping down counters, doorknobs, cabinet handles, TV remotes, telephones, cell phones, etc with disinfectant wipes or a thin cloth soaked in rubbing alcohol.

The best way to deal with the fear of getting C-19 is to stay home as much as is possible and maintain strict hygiene. The virus has no feet nor wings. It can't get to you unless you give it opportunity.



SSI and Disability - who will get checks from the government in addition to your regular check

https://howtogeton.wordpress.com/will-disabled-people-get-stimulus-checks/?fbclid=IwAR0u8ooiJiaix8UBxqNbTyTLRzfwvGBvJI0KZxMLsvu3KSvQlV7Qe8Rs4Vc


Very Good Article and Information for the future of society

 https://www.theatlantic.com/health/archive/2020/03/how-will-coronavirus-end/608719/?fbclid=IwAR1BfIkWVqym_-9UWl1QeqpwD1mYxKEwdf-M1v3QbLuhwat2Vxt0qCPucS0 


How the Coronavirus spreads - how to clean yourself and your home

https://video.foxnews.com/v/6142851412001?fbclid=IwAR0bypP3EEFlmp3UFK4qbm3mh1vwLBj_KIS-Ai1i-YhguoQbUCVANNzqGfE#sp=show-clips


New information from Emergency Physicians

https://www.emergencyphysicians.org/COVID19


New You Tube Video  about Coronavirus and RyR1 Mutations

https://www.youtube.com/watch?v=ARXFhnJJj-w


New Website for Rare Diseases and Covid - 19 Just published

 https://globalgenes.org/coronavirus-covid-19-resources/ 


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Covid-19 Research Updates: Chinese Study Reveals That Hypokalemia Present In Almost All Covid-19 Patients

Source: Covid-19 Research  Mar 09, 2020  10 days ago


A new research study by researchers from Wenzhou Medical University in Zhejiang province lead by Dr. Don Chen revealed that almost all Covid-19 patients exhibited hypokalemia and that supplementation with potassium ions was one of the many factors that assisted in their recovery.
 

Hypokalemia is best described as low level of potassium (K+) ions  in the blood serum. Mild hypokalemia does not typically cause symptoms. Symptoms may include feeling tired, leg cramps,  weakness, and constipation. Low potassium also increases the risk of an abnormal heart rhythm, which is often too slow and can cause cardiac arrest.
 

It was found that as the SARS-CoV-2 coronavirus attacks human cells via the ACE2 (Angiotensin- converting enzyme-2) receptors, it also attacks the renin–angiotensin system (RAS), causing low electrolyte levels, particularly in potassium ions.
 

The study involving 175 patients in collaboration with Wenzhou Hospital found that 93% of patients exhibited hypokalemia and for those who already had hypokalemia, the situation drastically worsened as the disease progressed.
 

However, it was found from the study that patients responded well to potassium ion supplements and had a better chance of recovery. The researchers noted that the end of urine K+ loss indicates a good prognosis and may be a reliable as a sensitive biomarker directly reflecting the end of adverse effect on RAS system.
 

The study has yet to be peer reviewed. It was published in the open platform medRvix  However, doctors at various hospitals in Wuhan, Shanghai and Guangdong have witnessed similar occurrences and also found that potassium ion supplementation helped patients towards recovery.


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How doctors can potentially significantly reduce the number of deaths from Covid-19


Mar 12, 2020, 3:20pm EDT


We already have medicines for treating cytokine storm syndrome, the immune response that’s killing many who die of Covid-19.

By Randy Cron and W. Winn Chatham  


Studies from China suggest that for many patients who die of Covid-19, it may be cytokine storm syndrome, rather than the virus itself, that deals the fatal blow. 


It is not yet clear what the death rate of Covid-19 will be, though the best estimate right now is that it is around 3%,  10 times more lethal than seasonal flu. Barcroft Media via Getty Images


Critically important studies emerging from China suggest that for many patients who die of Covid-19, it may be their own immune system, rather than the virus itself, that deals the fatal blow. This is called a cytokine storm.


During a cytokine storm, an excessive immune response ravages healthy lung tissue, leading to acute respiratory distress and multi-organ failure. Untreated, cytokine storm syndrome is usually fatal. Patients in other studies who developed cytokine storm syndrome after viral triggers often ironically possessed subtle genetic immune defects resulting in the uncontrolled immune response.


Over the past two decades, much has been learned about the diagnosis and treatment of cytokine storm syndromes. On the front lines of the Covid-19 response, it is critical that medical professionals are aware of the syndrome and prepared to identify and treat it. This act of preparation could help to significantly reduce the number of deaths from Covid-19. In treating cytokine storms brought about by other illnesses, like other viral infections and autoimmune diseases, death rates among patients suffering a cytokine storm have been reduced to as low as 27 percent.


Until vaccines for the novel coronavirus are available, likely a year or more from now, it is possible that millions of people may become infected around the globe. This is in part due to minimal early symptoms in up to 80% of those who become infected. 


However, seemingly mild cases of Covid-19 can morph into more severe cases involving the lower lungs and up to 20% of symptomatic novel coronavirus infected individuals require hospitalization, with 5% overall needing intensive care. Although individuals who are elderly or who have underlying chronic health problems are at a higher risk of mortality, younger previously healthy people have also succumbed to severe Covid-19.


Cytokine storm syndromes go by many names, but they share the pathology of an overly active immune response that leads to frequently fatal multi-organ dysfunction syndrome (MODS). The risk factors for why some previously healthy individuals become deathly ill remain unknown. There are likely host factors, including genetic mutations that put individuals at higher risk. Until the risk factors are known, the medical community will need to treat those Covid-19 patients based solely on the severity of their disease.


How to screen for cytokine storm syndrome in sick patients

While novel and repurposed anti-viral therapies are being explored to treat Covid-19, those individuals with cytokine storm syndrome also require treatment of the overly active immune response. In these situations, an overactive immune response can be deadly. All Covid-19 patients sick enough for hospitalization should be given a cheap, quick, and readily available serum ferritin blood test. Indeed, elevated serum ferritin values have recently been reported in Chinese hospitalized patients with Covid-19. This is a good first screening tool for the possibility of a cytokine storm syndrome in sick patients with high fevers.


The question then remains how best to treat a cytokine storm syndrome once it is identified. The treating physician is often placed between a rock and a hard place. Corticosteroids can be powerfully broad immunosuppressive agents, and they are inexpensive and readily available throughout the world. However, it can be frightening for a physician to treat a severely ill, infected individual with such powerful and wide-ranging immune suppression.


We already have medicines for treating cytokine storm syndrome triggered by viruses


With the development of biologic therapies for a variety of rheumatic, oncologic, and other conditions, novel approaches to treating the immune response are now available. These highly targeted medicines go after one or a few inflammatory molecules, including cytokines, without the general immune suppression effected by corticosteroids and other relatively non-selective immune suppressants.


Recently, a number of specific anti-cytokine approaches have proven effective in treating a variety of cytokine storm syndromes, including those triggered by viruses. These include drugs targeting interleukin-1 (IL-1), IL-6, IL-18, and interferon-gamma. While randomized trials will be needed to confirm which, if any, of these therapeutics will effectively treat Covid-19-infected patients with cytokine storm syndrome, IL-6 blockade has recently been reported to be in use in China with successful outcomes in some individuals receiving this as part of their treatment.


[Addendum re: IL-6 blockade]  

Patients infected with coronavirus COVID-19 responded positively to the arthritis drug Actemra, first approved by the U.S. FDA in 2010 for rheumatoid arthritis, China’s National Health Commission said on Wednesday 4th March, 2020. Actemra doesn’t directly kill the novel coronavirus but is an inhibitor of the receptor of interleukin 6 (IL-6), a proinflammatory cytokine. In the disease COVID-19, the body may respond to the pathogen by overproducing immune cells and their signaling molecules in a dangerous phenomenon called cytokine storm. Chinese authorities have already included elevated IL-6 level as an indicator of disease worsening. In its current update, Actemra’s use is limited to patients with that marker.


While working to prevent future outbreaks of deadly coronavirus infections with vaccine development and discovering new or re-purposed anti-viral medicines to treat the virus, we must also use all the knowledge at our disposal to treat those patients most at risk of dying – including from Covid-19-induced cytokine storms. For this to occur, the medical community must first be aware of the possibility, then make the diagnosis, and finally treat infected individuals with overly active immune responses that are harmful, if not fatal, left untreated. This should help save the lives of those unfortunate individuals at risk of Covid-19 induced cytokine storm syndrome.


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What you may not know about coronavirus -- the disease that has reached pandemic proportions -- is that one of the times you are most vulnerable to contracting it is while you're sleeping. Here is how this can happen, and what you can do aboutCoronavirus infects cells below the voice box, in the airways and deep in the lungs, unlike flu viruses which start with your nose and throat. Other than via tiny particles inhaled in air, coronavirus reaches those cells via fluid in the nose or throat that sneaks past your voice box (this is called aspiration) and slides down your windpipe, or trachea.Studies have shown that at least half of normal people -- young, middle-aged, elderly -- aspirate at night during sleep. By the end of a week, probably we all have. After taking a sleeping pill or a couple beers or shots -- and sleeping more deeply -- the chance of aspiration is even higher. And as we age, ordinary swallowing often becomes less well coordinated.If you have lung damage from smoking, swallowing saliva, which we all do while we sleep, can deliver even more aspirated throat contents into the lungs. The amount of fluid aspirated during sleep is enough to cause pneumonia -- in fact, it's how most pneumonia occurs.So why don't we wake up with pneumonia every morning? First, most of our noses and throats carry safe bacteria, not microbes like coronavirus that can cause pneumonia. Second, our deep lung has some cells that kill microbes that arrive there.Lastly, healthy people have a robust system for transporting the aspirated viruses and bacteria up the windpipes and dropping it in the esophagus, where it is swallowed and begins to be digested with the saliva we make. Some people get mild diarrhea from this virus because it can infect cells in your gut, too.Daytime (waking) aspiration, such as when food goes down the wrong pipe, is coughed up -- if you have a normal cough reflex and a strong cough. Each of these protective factors for relatively young and healthy people can be impaired with lung disease and advancing age.Getting sick from coronavirus likely depends on the relative weights of two factors: vulnerability to lung infection, and how many coronaviruses get into the lung. A vulnerable person, with lungs or airway function impaired by years of smoking, or persistent asthma, or immune compromise from drugs or disease, is more at risk from even a small number of viruses.Healthy, non-vulnerable people are more likely to resist and "clear" a small number of viruses, or maybe just get a little sick, after chance contact from an infected person -- but they would still be susceptible if they are exposed to a higher amount.How can you limit your personal exposure to coronavirus? Move away from people breathing in your face, avoid indoor close gatherings of people, and stand some feet away even when outside. Dress warmly so you can seek blowing air, even when it's cold. Don't spend long in a poorly ventilated rest room where someone may have coughed hard moments ago.Be extra careful if you are a vulnerable person. Sufficient masks must be made readily available for hospitals, clinics and other caregivers. Everyone else, meanwhile, should use avoidance to minimize virus particles deposited near your face.And since you may well have been exposed anyhow, remove any coronavirus already around your nose and throat: Wash your hands and face well with soap and warm water, including -- on a finger -- a quarter-inch into each nostril. Then gently blow your nose. DON'T use those irrigating devices, like neti pots, that might force virus further inside! Brush your teeth and tongue, swish and spit, and gargle once or twice with an antiseptic mouthwash.

The key is to minimize the virus burden around and inside your face before you go to sleep.Limit sedation before sleep during an epidemic. If you use a device at night for sleep apnea, make sure it remains away from where people could cough, sneeze and breathe on it, and clean it regularly.That's how to minimize exposing your lungs to any lurking coronavirus dosage you might encounter. 


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Information for Dealing with Periodic Paralysis and related disorders

Please access the two following websites: 

www.hkpp.org

www.ppa.org

Please remember, you are dealing with a rare disease already. We suggest staying at home and limiting contact with individuals outside your home. Use the phone and internet. Wash your hands frequently, maintain a 10 foot perimeter around yourself and other people and DO NOT touch your face. 

 

To Talk to someone

In an emergency you may call the following number. This number is located in the USA and will be answered if possible. Please do not call in the middle of the night EDST.

+1 407-339-9499

This number is only for people with Periodic Paralysis 

You can also text this number at anytime

 


Testimonials

This space will be used for testimonials from people who are dealing with Covid-19. We ask that you send all your testimonials to lfeld@cfl.rr.com and they will be posted here. This is an extremely valuable tool to help your fellow friends who have periodic paralysis and we hope that either you or a family member will send information about how you became sick, how long it took to be tested and get results, and how you are managing your care. 

Patient 1

 I’m hypo PMC and I have covid 19. I’m going to try and keep this  as short as possible. hopefully some of this information might be helpful to others.  

When did I first notice symptoms and what were those symptoms:

  • I started to notice nasal pressure and what could be described as congestion, but with no runny nose, very dry nose.
    I get seasonal allergies so I just thought that was it. Then I started to also noticed I was having a sore throat. I just thought it was seasonal allergies.
  • About 10 days ago I was at the gym and I was halfway through my workout and I just could not continue. I was having some chest discomfort, no other way to explain it other than chest discomfort, chest irritation and trouble catching my breath.  
    As long as my diet is on point, and it is, I rarely have trouble at the gym. Nonetheless I just chalk this up to periodic paralysis.  The next day the same thing happened, halfway through my workout I had to leave and go home and lay down for the rest of the day.
  • By this point my nose and throat were extremely dry, I just chalked all my problems up to seasonal allergies and my periodic paralysis acting up.  
  • The following night I woke up with trouble catching my breath, extremely dry throat, could not feel my lungs with air, discomfort in the chest, not necessarily pain, just a strange discomfort and may be a little bit of pain. I just assumed I was having a really bad periodic paralysis attack. It was so bad I went to the emergency room.  While I was there they checked me for pneumonia, bronchitis, flu, strep throat, did a chest x-ray. They also tested my potassium and it was 3.5. I’m usually 4.2. Anything below 3.9 or so and I’ll start to have an attack.  Everything was fine with all the tests they did.   
  • I had a slight cough, but nothing bad, just a dry cough that I attribute to a tickle in my throat and my throat being so dry. No fever. Just really a lot of breathing trouble and a lot of discomfort in my chest.  The ER doctor said if you did not have periodic paralysis I would actually check you for Covid 19. I said, I’m here let’s just do that, she agreed.  
  • I still assumed it was all periodic paralysis based. All week long my breathing has become worse. If I’m laying in bed I seem to manage OK, as soon as I have to stand up my breathing becomes labored.  
  •  Friday morning I was awoken again having a bad attack, felt like my nose and throat were closing up, I was struggling to get air, nose and throat extremely dry.  I went to the ER again. They did another chest x-ray, it was fine I was supposed to call on Friday to get my Covid 19 test results. While I was at the hospital they let me know that I tested positive for it.   
  • My chest x-ray was clear and my oxygen level was fine. The doctor told me that because of my underlining health condition that if I came back one more time struggling she would admit me to the hospital. She said as long as your oxygen levels remain strong you’ll do just fine, self quarantine, however if you have breathing trouble you need to come back because your oxygen levels may be dropping. She said you should easily fall into the category of the 80% of people that recover without medical intervention. However with your periodic paralysis I just don’t know. She said if you have any more breathing trouble: ambulance, do not drive yourself to the ER, and we will admit you.  
  • What treatment did she suggest:
    Mucinex, a cough suppressant, albuterol inhaler, DayQuil and Nyquil.


I think rather than saying just go home and do nothing laying in bed let’s hope he gets better, she was trying to give me something for symptom relief. Even though I don’t have any mucus that I’m coughing up, no chest congestion, I think she’s just trying to be helpful and maybe be a little ahead of the curve in case those things come up.  

I can’t take the albuterol inhaler because that would lower potassium.  I did try DayQuil, it did nothing to relieve the sinus dryness or pressure. Also if I take DayQuil or NyQuil too long it’ll put me into an abortive attack.  

I tried saline flushes for the nose and that only gave relief while I was doing it, but within a couple of minutes of being done the dryness and pressure came right back.   

I’m not worrying about taking the cough suppressant, I’m not coughing anything up, it’s more of an irritating cough than anything else and it’s just nothing to worry about.   

What I have found that works is keeping a humidifier in my room. Using the breath right nasal strips that people put on the outside of their nose to help with snoring, it opens up the nasal passages and that’s been extremely helpful. Are use maximum strength Afrin nasal spray. That works immediately to open up the nasal passages. Even though it’s a 12 hour medicine, it really only works for four or five hours. Then I have to do it again.  I did get Mucinex, I took it, but found no relief with it. That makes sense because I don’t really have congestion in my chest, chest trouble, but not congestion.    

I’ve been putting Vicks vapor rub right inside of both nostrils that also really helps out.  Then just lay in bed and do as little as possible.  

I take my temperature five or six times a day, I’m always in the 97’s, I still have no fever.

My symptoms are basically a cough, extremely dry throat and nose, to the point where you struggled to get oxygen, chest discomfort, with a little bit of pain, and also a feeling that is not easy to describe . Chest discomfort that I’ve never felt in my life. Get tired very easy, some body aches, nothing too crazy, but a little bit, I become winded very fast.

I usually take potassium daily, I’ve had to up that at this point. There is an article being circulated that shows people that come down with Covid 19 also have potassium loss. I have noticed that when I supplement with potassium I feel better, I can breathe better. So I have been taking more than that than usual.   

As soon as I feel like I’m having breathing trouble I take a little extra potassium, being sure at the same time to not overdo potassium.  It seems to help every time. 

Unfortunately for me potassium causes my myotonia to act up. I’ll take bad myotonia and breathing better any day, so I’m just dealing with it. 

That’s pretty much it. I’m lucky enough to be one of those people that do not get angry when a doctor is honest with me and tells me there’s really nothing they can do other than symptom management and assist breathing if needed.  

There is some medicine being used in different countries, it’s not being used here. You’re basically going to get symptom management at home, and if you get bad enough you’re going to be put into a hospital and you may have to go on a ventilator. The fact is the majority of people that get Covid 19 do not need to be ventilated and do not need to be put into the hospital. 

You do need to Quarantine.  

Ask me any questions if you have any. I use talk to text, it doesn’t always pick up the words correctly, so if something is not clear just ask.  
 

patient 2

 


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