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Are MPS patients high risk patients?

If you are living with MPS or related diseases, many ask themselves to what extent they are at risk and what to consider. Dr. Christina Lampe and PDDr. Nicole Muschol (both from Germany) have made the following recommendation on that subject:
Novel coronavirus Infection (SARS-CoV-2) lead among others to nonspecific constitutional symptoms especially to lung involvement (cough, shortness of breath, pneumonia, lung failure). It can therefore be assumed that patients with muccopolysaccharidoses are at higher risk to show severe progression in the course of a COVID-19 infection.

For detailed information please contact Priv.-Doz. Dr. Florian Lagler – head of the institute for congenital metabolic diseases in Salzburg using the following email address: f.lagler@salk.at

With regard to prevention as well as any suspicion of an infection, we refer to https://www. oesterreich.gv.at/

How to deal with the enzyme replacement therapy (ERT)

It is clear to avoid contact with people who do not live in the same household wherever possible. So many patients wonder whether to continue or pause the ERT in order to minimise the risk of infection with the coronavirus.
The decision is in any case an individual one. Talk to your attending physician to weigh up risks and all possible consequences. Discontinuation of ERT in patients having allergic reactions may have negative effects and should therefore be continued.

Generally speaking, home therapy means less contact compared to the treatment in a clinic or medical practice. The risk of infection is perhaps lower. However, the prerequisite is a sense of responsibility of the nursing staff in dealing with the patient. Inform yourself if appropriate arrangements have been made by the home therapy service provider to minimise the risk of infection.

There are two providers of qualified medical staff for ERT in home therapy in Austria.

Here below the contacts:

• Healthcare at Home – nicole.ettl@healthcare-at-home.eu (+43-660-1910176)
• infusion@home – markus.brichta@infusionathome.at (+43-664-2118186)

They have already carried out thousands of enzyme replacement therapies in home therapy and have agreed to take over the carrying out of the therapy for MPS patients quickly and unbureaucratically. The only condition is a prescription approved by the health insurance.

Where do I get further information?

Information for MPS patients
handout by Sanofi Genzyme

Information for chronically ill children gathered and updated by the organisation Kindernetzwerk

COVID 19: How to pull through isolation and quarantine
https://www.boep.or.at/

Risikoeinschätzung von Dr. Klaus Kapelari Quelle: https://www.medmedia.at/im-fokus/corona/covid-19-bei-kindern

Risk assessment by Dr. Klaus Kapelari

Questions on findings about an increased risk regarding the coronavirus infection

  1. Is there a person in your household with a confirmed coronavirus infection?
    Yes → at any rate corona ambulance and protective measures
  2. Is there a person in your household under quarantine because of direct contact with a coronavirus infected person?
    Yes → at any rate corona ambulance and protective measures
  3. Does your child have a dry cough or when > 5 years signs of laboured breathing (e.g. rapid breathing)?
    Yes → consider corona ambulance
  4. Does your child have temperature? High (> 39°C = low risk)? →
    immediately see a specialist without protective measures (if 1 +2 not applicable)
  5. Is the child under 5 years old (= low risk)? → see a specialist without
    protective measures (if 1 +2 not applicable)
  6. In general: children under 5 years and temperature over 39°C and / or respiratory problems, if 1. and 2. are not the case
    → coronavirus infection very unlikely, but see a specialist immediately!

Remarks:

Children are less likely to suffer from Covid -19 than adults. According to a study published in the New England Journal of Medicine (NEJM), only 1% out of 72.000 cases were less than 10 years. Of 1391 children 12,3% were tested positive. Only 18% of the children who were tested positive were < than 1 year old and 23,4% of the children were between 1 and 5 years old. The majority of the children tested positive (58,5%) had a temperature < 37,5 °C. 22.8% had a temperature between 38,1 und 39°C and only 9,4% had > 39°C.

Conclusion: The higher the temperature and the younger the child, the lower the risk of being infected with SARS-Cov-2. Excluded are family members who are tested positive.

Ref.: N Engl J Med. 2020 Mar 18. doi: 10.1056/NEJMc2005073
Dr. Klaus Kapelari, released 21.03.2020

 Coronavirus and mental health

An article written in English by Andrea Nenadic, physiotherapist, MPS Europe – mainly for adult MPS patients

Coronavirus (Covid 19) and pandemia are global problems that cause uncertainty, fear, stress and the most likely – panic. This is definitely a traumatic event and we all try to find the most suitable ways to deal with the unknown and unpredictable situation.

Everybody has different reactions to stress and it depends of previous experiences, background and people that you are surrounded with.

Overwhelming fear can affect changes in sleep and eating habits, difficulty to concentrate, worse overall health, increase use of alcohol, drugs and cause or increase anxiety and depression.

In response to Covid-19, we have guidance to avoid social events, crowds and people in general, which also creates not only physical distance but also social and psychological. This social distance affects people’s mental health, and it is especially challenging for people who already deal with depression and anxiety, because those disorders are already isolating by themselves.

How can we protect our mental health?

First, limit information that are coming. There are so many stories out there, every channel, every newspaper, social media talk about coronavirus and we find it difficult to keep our life alive and not identify with overwhelming feelings that cause constant exposure to sources. You can find one trustful source that you will follow and try to limit frequency of update in order that you feel comfortable with. Also, follow yourself and know when it is too much for you, so that you can support yourself to say no to information or people who are bragging all the time about present disease.

So, find trustful source and practice information (social media) discipline.
Because of isolation and separation, it is important to create feeling of emotional security. Find a friend or family member that you will speak online every day. In addition, you can build online community and gather people with who you share same interest. Many organizations and institutions in your city provide psychological support, so you can pick up a phone and have contact with someone who is willing to understand you.

Try to keep routine and have structured time. Healthy meals, regular sleep and exercise (there are so many online workouts) and productivity (podcast, book, work) will bring you more joyful time and make you feel that your life didn’t stop because of coronavirus.

If you are dealing with anxiety because of coronavirus, try to listen what your anxiety is saying to you, try to name your fears. You can write them down or you can find someone to speak with. Be gentle toward yourself, because any feeling in this situation is understandable.

You are not alone in the fight with coronavirus, and except practicing guidelines we encourage you to take care of your mental health, to bring more conversation, intimacy and relationship in this period of isolation.
You can write us to adultsupport@mps-europe.org

Reccomendations for psychological management of the quarantine situation*

An article written in English by EDUARDO BRIGNANI from Spain, psychologist and physiotherapist, specialized on rare diseases, disability and family

Given the global situation generated by the CoV-19 coronavirus pandemic and the effects of the declaration of the state of alarm, we would like to share with you a series of recommendations regarding the psychological management of this circumstance. We want to avoid that fear becomes an uncontrollable phenomenon that makes the health situation, which is already quite complex in MPS, more difficult and, on the other hand, makes the situation of mandatory quarantine more tolerable.

REMEMBER THESE WORDS:

  1. CALM
  2. CONTROL
  3. CONTRAST INFORMATION
  4. JOIN US
  5. HELP US
  6. SHARE
  7. TAKE CARE
  8. PROTECT YOURSELF

1. MANAGE YOUR EMOTIONS:

Fear is one of the basic emotions of our psyche and a normal and healthy reaction to unknown, threatening and potentially dangerous situations like the one we are experiencing. It helps us to stay alert and take the necessary measures to minimize risks, either through the avoidance of danger or through control and coping mechanisms. But, fear can also become something that blocks us and prevents us from managing threats effectively, it can lead to hopelessness and paralyzing panic. Fear is controlled much better through our healthy behaviors than through unnecessary reasoning or worry.

However, the situation of being in forced quarantine also can produce sensations that go, among others, from loneliness to uncertainty, going through anger, sadness, boredom, anguish or stress. To recognize what we feel is to begin to prevent these emotions from becoming an emotionally added viral problem, and to ensure that people who has to be quarantined live with calm, intelligence and good disposition, which will generate the maximum well-being for them, you and the population as a whole. Acknowledge your feelings and accept them. If you need it, share it with those closest to you, write a blog…

Remember, all the bad times you have already experienced and overcome. This situation is novel, different and universal. But your strength is fed by your fighting spirit for having overcome many problems in your life as a result of the MPS disease. Whether you have tested positive or are waiting for results, avoid being caught by catastrophic or blaming ideas. It is a collective problem, everyone’s responsibility, which we have to face with responsible and positive attitudes.

2. GET INFORMATION

You will have plenty of time to find out how the situation is evolving. Consult only official or trusted information channels to avoid rumors or fake news.
Too much information, will probably increase your anguish unnecessarily.

3. INFORM THE OTHERS WELL

Avoid spreading rumors and misinformation. Before sharing news, it is very important to verify its source. Share only relevant information and avoid making catastrophic comments. They add nothing and take away emotional vitality. Avoid talking about it permanently or sharing anxieties with affected people.

4. IN CASE OF INFECTION

If you have been infected, explain, clearly your situation to the people around you, such as family, friends and people whom you have been in contact with in recent days. This is the way to avoid unnecessary infections and together you can start taking preventive measures for the next few days. Try to maintain a comforting attitude with those around you.

5. WITH OUR CHILDREN WITH MPS

We know that they find safety and comfort in their daily routine. This emergency situation has been blown up. Staying at home is a challenge. During this time we will need to be patient and creative to find different ways to make activities and entertainment for them.

Keep them informed. Don’t undermine their ability to understand you; provide proportional explanations adapted to their level of understanding.

Don’t lie to them, don’t ignore them with silence. Try to tailor the information, do not give them more than necessary.

Reduce their fear by explaining that the people around them know how to protect and take care of them.

6. GET ORGANIZED

We are not used to this situation. Normalizing it, understanding that we can all be tense and nervous, avoid conflict situations.

Reach explicit agreements with trusted people about what your domestic logistics will look like during the quarantine: purchases, or care of the dependent child. Talk about organization and details.

Being quarantined can be a great time to share care and household chores.
Sharing them is essential to prevent fatigue from falling on one person.

Living with others is not being “stuck” all day; Let’s respect different spaces and times. We all need our space and time available only for us.

7. STAY CONNECTED

Try to keep in touch with your family and friends. Call them, send them messages, make video conferences. You will feel closer and less isolated.

Follow the recommendations and preventive measures determined by the health authorities. Trust the science and experience of our healthcare system.

8. STAY ENTERTAINED

Let us accept that there is a part of the situation that is not in our hands and that we cannot control or foresee.

Try to do some type of physical exercise, individually or with your family. It is true that “Mens sana, in corpore sana” – A healthy mind in a healthy body!
Learn about the wide range of free online entertainment available online and in the media today.

Let’s use a sense of humor. Humor is an emotion that will help us reduce anxiety and keep another negative emotion – fear away.

 For your entertainment >>

DON’T FORGET:
IT IS ONLY A TEMPORARY SITUATION. WHEN ALL THIS IS OVER, WE WILL LEARN MANY THINGS FROM OTHERS AND FROM OURSELVES.

EDUARDO BRIGNANI
Psychologist, Psychotherapist, specialized in Disability, Family and Rare Diseases. Psychologist of the Cornelia Spain Association, of the Catalan Association of Rett Syndrome, of the MPS-Lysosomal Association of Spain. Advisor to the Spanish Federation of Fragile X Syndrome. Coordinator of the COPC Working Group “Psychology + Disability”. DINCAT-Plena Inclusió Trainer

* Adapted from documents of the Col·legi Oficial de Psicologia de Catalunya (COPC) www.copc.cat

Shopping counts!

In addition, there are other ways of how to help MPS children when you do your shopping:

  • Have you ever heard of amazon.smile?

This link is a donor link: smile.amazon.de is nothing else but the amazon you know. The same products, the same prices, the same service. Smile.Amazon is a simple way for customers to support a non-profit organisation of your choice without additional costs with every purchase.

Click the amazon smile logo, log in as customer and choose the aid organisation you want to support with your purchase. Amazon Smile started on 11 November 2016 in Germany and Austria: Amazon donates 0,5% of the sale price of its qualifying smile.amazon.de - purchases to the selected charity.

This is how amazon customers can support non-profit organisations with 0,5% via the amazon smile program.

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