Common Symptoms

Symptoms

What are the challenges that rare autoinflammatory diseases pose for children?

Dr. Michaël Hofer is a pediatric immunologist and rheumatologist based at CHUV, the University of Lausanne, Switzerland. He is an expert in rheumatic diseases affecting children and teenagers, including autoinflammatory syndromes. Here, he outlines the difficulties as children transition from childhood to adulthood.
 

What are the symptoms of recurrent fever syndromes?

This booklet will help you understand what hereditary recurrent fever syndromes are, their most common symptoms, how these autoinflammatory diseases work, how they are diagnosed, and how you or anyone affected by periodic fever syndromes learn to live with these life-changing conditions.

Referral

How do you find a rare autoinflammatory disease specialist?

When it comes to autoinflammatory disease, a specialist doctor can provide you with all of the information, advice and care that you and your child need. Here are some things you’ll want to consider in choosing a specialist:

1) Specialist or primary care physician?

Your child’s regular doctor, pediatrician or primary care physician will always play an important role in their care, but it’s important to remember that they are not experts in every single disease, so may not have the deep understanding of your child’s specific rare autoinflammatory disease. A specialist will have that expert knowledge you need and be able to offer individual, tailored advice to you and your child.

2) What kind of specialist?

There are a number of different specialists that may be able to help, depending on your child’s condition. If your child has systemic juvenile idiopathic arthritis (SJIA) for example, a rheumatologist, who specializes in joints and arthritis, may be recommended. Genetic specialists are also important to consider as they can provide information on the cause of the disease. The best thing to do is ask your child’s primary care physician, as they should have an idea of the kind of specialist care your child will benefit from most. If your child has multiple health needs, they may need multiple specialists. In this case, it will be important to put each specialist in touch with the other members of your child’s specialist team, so that they can make sure all suggested treatments are complementary and ensure your child is receiving safe, effective care.

3) What if you have to travel?

Travelling with an unwell child can be difficult, so it’s important to find a specialist not too far away. Some specialist centers provide transport, and some insurance policies may cover cost of travel too, so be sure to check before making your decision.

4) Does your insurance cover the care?

If you live in a country that requires health insurance, it’s important to create an open line of communication between you and your provider, as much as possible. Before you book an appointment with a specialist, check your policy will cover it and what information your provider requires. Talk to your provider if you have any doubts or questions.

Speak to your primary care physician first as they are likely to know about a number of different experts in your area and can use their connections to find out more.

Resources such as Orphanet can also help. Orphanet provides access to a directory of expert services and centers for rare diseases or groups of diseases. We would always recommend checking with your doctor once you’ve found a specialist through Orphanet, to make sure they agree with the choice. Your child is special and finding them a specialist doctor can help ensure they are receiving all the care they need.

References:
1. WebMD. (2018). How to Choose a Doctor. [online] Available at: https://www.webmd.com/health-insurance/how-to-choose-a-doctor#2 [Accessed 5 Sep. 2018].
2. nhs.uk. (2018). Amyloidosis. [online] Available at: https://www.nhs.uk/conditions/amyloidosis/
 

How do you prepare for a medical appointment?

Good communication with doctors and other healthcare professionals is important in helping you fully understand what your child’s diagnosis means, what treatment options are available, and how to care for your child. Here’s a step-by-step guide on what to do before, during and after medical appointments:

Take notes:

  • Make sure to write down all of your questions before you go to your appointment. Why not use a list app on your phone to keep track and note questions down as you think of them?
  • It is helpful for your doctor to know what symptoms your child has been experiencing and the more detail the better! Use your phone to keep track of your symptoms in a separate list.
  • Bring a record of your child’s previous treatments with you, as this will help the doctor in making any decisions.

During your appointment:

  • Take detailed notes while you’re there. Maybe even record the conversation using your phone. Just be sure to ask permission from the doctor first.
  • Bring a family member or friend. They can support you in asking hard questions, and provide an extra pair of ears in case you miss anything.
  • Be honest and try to be specific when talking to your doctor about your child. It’s not always easy, which is why it’s important to prepare.
  • Agree your next appointment date before you leave the office or hospital.

Afterwards:

  • Go over your notes and make sure you understand everything you spoke about with the doctor. If you are unsure about anything, talk it through with the person who was in the room with you, give the doctor a call, or book a follow-up appointment.
  • Update your family and friends so they can support you and your child with the next steps.

Doctor’s appointments don’t have to be scary, stressful or negative experiences. Once you take the right steps to prepare, you can leave an appointment feeling well-informed and positive about you and your child’s next steps.

References:
1. National Institutes of Health (NIH). (2018). Talking to Your Doctor. [online] Available at: https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/clear-communication/talking-your-doctor [Accessed 5 Sep. 2018].
2. WebMD. (2018). How to Talk to Doctors When They Don’t Listen. [online] Available at: https://www.webmd.com/a-to-z-guides/features/be-heard-by-dr#1 [Accessed 5 Sep. 2018].
 

Find out what all the complex wording around periodic fever syndromes is in plain language

When you understand what all of the complicated sounding terms and medical language to do with autoinflammatory diseases mean, you will be able to have much better conversations with doctors about them.
 

What are the questions people ask most about periodic fever syndromes?

Dr. Isabelle Koné-Paut, currently Head of the Department of Pediatric Rheumatology at the Paris SUD, Bicêtre University Hospital and coordinator of the National Reference Centre for Autoinflammatory Disorders answers them all here. If you don’t see the question you want to ask, please visit our Facebook page and post them there.
 

How is the presence of a periodic fever syndrome determined?

Marco Cattalini, Head of Pediatric Rheumatology at the Pediatric Clinic, Spedali Civili of Brescia and Assistant Professor of Pediatrics at the University of Brescia, Italy, shares his insights on the signs of periodic fever symptoms and how to find a specialist treatment center that fits your child’s needs.

What should you do if you suspect your child has a periodic fever syndrome?

The correct diagnosis of a periodic fever syndrome can be a challenge to doctors and physicians for three main reasons:

  1. Periodic fevers are very rare diseases in most countries and physicians - with the exception of those working in specialized centers - are often unfamiliar with their clinical presentation.
  2. Since the diseases are very rare, the index of suspicion is usually low.
  3. Clinical manifestations are usually not pathognomonic (distinctively characteristic of a particular disease or condition), but may overlap with much more common conditions (such as airway infections).

Start a "Fever Diary"

One of the main characteristics of periodic fever syndromes, from the mild to the more severe, is the recurrence of symptoms, such as high fever. It is our experience that the attention of the family first and the referring physicians thereafter are attracted by the recurrence of identical episodes. For this reason, if you suspect your child has an autoinflammatory disease, one of the best things you can do is to keep a “fever diary.” It’s not unusual that when we first see a child with “recurrent fevers” and we cannot come to a definitive diagnosis, we ask the parents to come back in a matter of months (depending on the severity of clinical manifestations) with the fever diary completed. In this diary you should note:

  • Exact date of each fever episode
  • Exact duration of each fever episode
  • If the child has symptoms associated with the fever (i.e., coughing, diarrhea). In the case of cutaneous manifestations (i.e., skin rashes) taking a photograph can be very useful
  • What was the therapy prescribed?
  • If laboratory or other tests have been prescribed, what were the results?

It is also very important that you ask your pediatrician to visit your child every time he/she has a fever and to help you fill in the diary with the precise signs associated with the fever.

Keep track of lab tests

During an attack, your physician may ask for laboratory tests (complete hemogram, ESR, CRP, urine analysis) that may be useful to see if inflammatory markers (an indication of inflammation in the body) are high during fever attacks and to rule out infections (i.e., pharyngeal swab, urine culture). If your pediatrician suspects an autoinflammatory disease, and there is a history of recurrent fever episodes with a high level of inflammatory markers during the attacks, it is also very important to take laboratory tests between the attacks, to see if the inflammatory markers normalize. One inflammatory marker that may be useful to check is Serum Amyloid A (SAA). Persistently elevated SAA levels may suggest a chronic inflammatory state, and it will be important to rule out a periodic fever syndrome.

If your diary shows recurrent episodes of systemic inflammation (i.e., fever, with elevated inflammatory markers and signs/symptoms of organ inflammation detected by your doctor) without evidence of bacterial origin, probably the most useful thing to do is to consult a physician with expertise on periodic fever syndromes for further work-up.  (You can find a link to the Orphanet Directory of centers in the Links and Downloads section of this website)

If people live in remote regions where specialist treatment centers are not as accessible as they are for those who live in large cities, what are the three top tips you can give them, so they don’t miss a moment in their care?

Periodic fever syndromes are very rare diseases and many physicians are not familiar with them. As specialized centers are not always easily accessible, a few strategies may help to optimize the care of every child with autoinflammatory disease:

1. Ask for a medical letter:

The final diagnosis of periodic fever syndrome is usually done in a referral center. At that time, ask the medical team to provide you a detailed medical letter that includes the following:

  • Main clinical characteristics of the disease your child suffers from, and the therapy needed (not only medical treatment but also other needs, such as physical therapy, etc.), explaining what the more common side-effects could be and how they could be managed
  • How frequently the child has to be seen by a physician, and what tests should be run. This “follow-up plan” may be individualized, according to how difficult it is for you to reach a specialist center: in many cases, it is possible to agree on visiting the referral centers just once/twice a year and to refer to local hospital/primary physicians for more regular follow-up. This plan, of course, depends on the final diagnosis, on the treatment regimen, and on how your child is doing under treatment
  • Whether the disease or related treatment contraindicate normal life activity (i.e., school, sports, etc.) or universal medical procedure (i.e., vaccination)
  • What to do in case of common childhood diseases (i.e., upper respiratory tract infections, gastroenteritis) and, if relevant, what drugs should be avoided
  • When it is crucial to contact the medical team of the referral center

2. Get contact details:

Ask the medical team for contacts (phone numbers, email addresses) where you or your primary care physician could contact the center in case of need and provide the referral center with the contacts of your primary care physician. Specialized centers can provide you and your primary care physician with all the information necessary to support you and your child. After a diagnosis is made:

1. Request patient association contact:

Ask for a patients’ association contact: patients’ associations for periodic fevers usually have their headquarters in referral centers, to be easily accessible, and are an invaluable help to manage your child’s needs. Referral centers may usually also suggest websites that provide verified information on periodic fever syndromes.

2. Call your doctor:

Promptly contact your primary care physician and share all the information gathered.

As with all rare diseases, the parents of children with periodic fever syndromes usually feel isolated and helpless, even after the diagnosis. It is very important you understand that, although rare, there are other families facing the same difficulties, and people working constantly to help you and your child to have the best possible lives. Keep in contact with them and help this community to grow stronger.

Diagnosis

Where can autoinflammatory patient support groups be found?

In this section you will find a wealth of information on, and links to, many interesting associations and bodies that can provide you with additional, helpful information around autoinflammatory diseases, periodic fever syndromes and related topics.

Click here to know more.

The ‘I'm Rare’ project helps people living with periodic fever syndromes find support and certainty

I'm Rare was created to spread awareness of rare autoinflammatory diseases and develop a network of support and experience-sharing for patients and their families with the specialists who treat them. People with rare autoinflammatory diseases can feel alone, frightened and uncertain about their future. Sharing experiences can help patients feel part of a family.

I'm Rare is a journey of meetings, video interviews and activities that bring together rare patients, families, healthcare professionals and patient organizations to listen, support and rely on each other, so no one ever feels alone.

Download the I’m Rare eBook to being your journey.

Treatment

What treatments are there for recurrent fever syndromes?

This booklet will help you understand what hereditary recurrent fever syndromes are, how these autoinflammatory diseases work, how they are diagnosed, and the various ways in which periodic fever syndromes can be treated.
 

What effects do autoinflammatory diseases have on family life?

Family life is complex enough. It can be difficult balancing work demands with family needs, but when a child has an autoinflammatory disease or periodic fever syndrome, striking that balance becomes even more challenging. Here is some advice that may be able to help:

Balancing sibling love and care

Caring for a child with autoinflammatory disease takes a toll on the whole family and can create challenges for healthy siblings. Family routines may change, and family life may alter, which can create feelings of uncertainty or confusion. Siblings may have to be mindful of their brothers’ or sisters' needs and be a little patient. At times, siblings may also feel a little frustrated and unable to fully understand what parents are going through, and why they dedicate more time and attention to the ill child. Parents try to love their children equally, but sometimes the brother/sister of a child with an autoinflammatory condition might not see it that way.

Important foundations for coping with this challenge can be put in place, starting with talking openly to your children about how they are feeling – the good, the bad and the ugly! Once shared, a feeling or issue can be dealt with, and hopefully overcome. Other approaches to consider are:

  • Explain your child’s illness to their sibling and why, at times, they need special care and attention
  • Set aside space for one-on-one fun and quality time with your children who don’t have an autoinflammatory disease, to ensure they feel special and loved
  • Put ‘family nights’ in the diary when you can do something as a whole family so no-one misses out, even if it is just watching a movie together on the sofa
  • Hug all your children often and tell them how much you love them
  • Keep a detailed diary so that all your children’s appointments and commitments can fit in as easily and fairly as possible
  • Initiate a family motto to ‘keep lines of communication open’; always being honest with each other and saying what is on your mind
  • Include siblings in the treatment and care of their brother or sister who has an autoinflammatory disease so they start to understand more about it

You may also want to think about talking to other parents of children affected by a similar chronic illness to gain insights from like-minded people on some of the practical or even psychological challenges faced in parenting a child with an autoinflammatory disease.

To have and to hold: keeping the relationship spark alive

Keeping the flames of passion burning is no easy task for many couples. Throw children into the mix and you may find yourself wondering if you'll ever get any alone time again! Add in a sick child and things get even more difficult. But being a parent of a sick child doesn't have to mean being romance-less. From turning off technology to turning on the physical contact, discover five tips to consider if you’re trying to keep your relationship on track.

1. Check in at least once during the day

Touching base one or two times throughout the day will keep the lines of communication open, which is an important tip for a happy marriage or relationship of any length. Send a text, chat during a break or even type up an email if time is limited. Or consider popping a note in their bag so they find it when they least expect it. And it shouldn’t just be about the children or household activities.

2. Make a point of increasing physical contact and scheduling time to spend together

Increasing intimacy with your partner is as easy as increasing physical contact. Every chance you get, steal a kiss or a hug, or simply hold hands while walking. Time spent alone, away from the demands of life is also essential for the health of a relationship. Consider planning a monthly date night. You can go to your favourite restaurant or visit the place you first met. Not only do you have the date itself, you also have the anticipation of the time alone together. It’s important for you to have something to look forward to so you can keep that spark alive.

3. Turn off technology

Alone time is hard enough to find with the obligations a home and family brings. Boost your romance by turning off the technology, like mobile phones, the television and email when you are trying to spend time alone together. Ok, this won’t always be possible when you’re out of the house but when you are in the house and your child / children are asleep, at least turn your phone’s settings to vibrate so any emergency calls still come through. Email will still be there later!

4. Put the kids to bed early

Even if it is just once per week, getting 15 minutes more of alone time is like striking gold. Scoring some extra couple time will make you better parents in the end, so don't feel guilty about putting the kids to bed a little bit early once in a while. More sleep is good for them!

5. Present a united parenting front

Instead of battling one another, feeling like you're on the same side will make your partner more attractive to you. So when it comes to parenting, try to support your sweetheart, even if you don't fully agree.
 

Can you or your child travel with a rare autoinflammatory disease?

Of course! Having an autoinflammatory disease or periodic fever syndrome doesn’t mean you can’t enjoy a holiday or well-deserved trip somewhere special on your own or with your family. Here are some tips on how to plan ahead and take the stress out of travelling.
 

Discussing travel arrangements with the doctor treating you

    common-symptoms-travel-article

    If you or your child suffers from a rare autoinflammatory disease, we recommend that you discuss your travel plans with your doctor well ahead of booking or taking the trip. He/she can give you advice on any health-related issues. He/she can also inform you about travel medicines and their potential interactions with medicines that you take regularly.
     

    Travelling abroad:

    Some countries require certain vaccinations, and some medicines need to be taken in a timely manner, e.g., malaria prophylaxis treatment1. When planning your trip, please obtain information about which vaccinations are necessary and appropriate for you or your child – make sure to speak to you doctor about any implications the vaccines may have on your regular medicines. It may take several weeks or months following vaccination before sufficient vaccine protection is in place, or boosters may be necessary. Particularly with trips abroad to different time zones, you may have questions regarding when to take your regular medication. These are all questions your doctor will be able to help answer.

    Children with an autoinflammatory disease can go to school as normal

    Maintaining a normal life is important for children and adolescents with periodic fever syndromes or autoinflammatory disease. One of the biggest parts of normal life for young people is education and going to school. Most children with an autoinflammatory disease can go to school as normal, from nursery all the way to college. To make it as easy as possible for your child, here are some things for you to consider:

    Information creates understanding

    Teachers and classmates don’t always understand how autoinflammatory disease impacts a child’s life, because they are unfamiliar with it. Teachers or classmates may have never heard of autoinflammatory conditions or met someone with one. Explaining the causes, the symptoms and what it means for your child, day to day, can improve their understanding and how best to involve your child in school activities. In turn, this may help your child settle into everyday life at school and take part in play time, school trips, celebrations, etc. If there’s particular everyday support you think your child might need due to living with an autoinflammatory disease, you may need to have further discussions with their teacher or the head staff at the school. By chatting this through openly, you can make a plan together with them on what daily support is available for your child and/or what can be done in certain situations to make their life at school easier. There are all sorts of things that can help,[1] including:

    • Giving them a second set of textbooks so they don’t have to carry heavy books back and forth to school each day
    • Allowing a little bit more time during written tests
    • Excusing them from taking part in certain gym class exercises, or on days when the symptoms are worse, and assessing their physical education performance a little differently to other pupils
    • Agreeing to late school arrival on some days, i.e. when they have been unwell in the morning but felt better later on
    • Letting them use an elevator or escalator, if available
    • Providing teachers or caregivers with written details of any medication taken during school time, along with permission to give the medication if necessary
    • Notifying staff of medical appointments that your child needs to attend as far in advance as possible
       

    Will my child need to go to a school that offers special care?

    When thinking about the right school for a child who has an autoinflammatory disease, the first question to ask is – does my child require special care? This depends on the nature and the severity of a child’s condition, so the answer will be different for everyone. If you think there is a chance they could need additional support at school, you might want to consider what type of extra support could be helpful and whether their regular school can offer this. Would a school specializing in providing care and support for children living with illnesses be better for your child? Many regular schools can provide assistance for children with particular health and educational needs. A discussion with the head teacher or principal can shed light on whether your child’s needs can be met.

    If you’re toying with the idea of a school that specializes in providing care and support for pupils living with illnesses, you should discuss this with your pediatrician and your child’s teachers, if they are already at school, to get their viewpoint before making any decisions. Your child’s school may also have a special health and educational needs coordinator who you can talk to. If it’s agreed this is what is needed, then it is a good idea to visit specialist schools in your area to check them out, as the level of tailored care and support that is offered at one institution compared to another can vary. You should also be able to get more advice from your local authority. In the UK you can also get more advice from your local Information, Advice and Support (IAS) Service.

    Once you’ve chosen a school, you may need to give them copies of medical documents or provide a letter from your pediatrician to show how attending that particular school would really benefit to your child.

    Missing school time doesn’t mean your child has to miss out on education

    Due to having an autoinflammatory disease, your child may need to miss school from time to time – sometimes even for longer periods. If you’re concerned about your child missing lessons and therefore not keeping up with learning, you should speak to your child’s school and your local authority. They can provide support to alleviate your concerns and help make sure your child doesn’t miss out on their education.

    There are options such as home schooling and hospital schooling, or a combination of both, that you can consider if your child is likely to be away from school for long periods of time. Your local authority should work with you to find a way to ensure your child can get as normal an education as possible.

    Sources: https://www.gov.uk/illness-child-education (last visited on 5.11.2015)

    Don’t forget your own needs as a parent of a child with an autoinflammatory illness

    You might find yourself putting your child’s needs first and your own second, or even third or fourth behind family and work. But it so important to make time for yourself and think about what support you might need. This section offers you some help and advice on managing the challenges you may face.
     

    How to manage expectations when living with rare autoinflammatory conditions

      common-symptoms-managing-exp

      Have you been living with a rare autoinflammatory (AI) condition for a long time or just been diagnosed? Either way, your condition is bound to affect your life. When living with rare AI conditions like SJIAAOSD and periodic fever syndromes: CAPSFMFHIDS/MKD and TRAPS, symptoms can occur randomly which means you never know how and when they will affect your day. The unpredictable nature of these conditions means you are likely to experience situations where you feel you cannot live up to other people’s expectations or you are in need of more support and understanding from the people around you. To help you build understanding amongst your friends, partner, and colleagues, and to navigate the maze of social interactions when living with these AI conditions, we have gathered a few top tips on what you can do to help keep your relationships healthy and your own stress levels down.

      Friends

      One of the things all the conditions have in common is the impact it can have on one’s social life. It is inevitable that sometimes you will encounter symptoms that may hinder your activities/hobbies, leading you to cancel or postpone plans. As we all know cancelling last minute never goes down well with friends and you may sometimes find it is easier to not make any plans at all – no plans = no disappointment, right? Wrong! Your symptoms will be unpredictable and it is therefore impossible to plan your life around your condition. Instead of avoiding plans, the better option would be to educate your friends on your condition helping them to understand your circumstances and needs. It is important that your friends know that your disease can change from day to day, sometimes affecting your ability to perform certain tasks which might lead to you cancelling plans last minute. By being open and honest with your friends they are more likely to understand and take your condition into consideration before planning hangouts, events or trips, and you will most likely find that they will be happy to skip the dinner or trip to the museum and instead come and hangout with you at home when you are not feeling well. Honestly, who wouldn’t prefer popcorn and a movie at home with a close friend over going out?

      Relationship

      If you are suffering from a rare AI condition where periodic fevers occur, in particular AOSD, where you’ve received diagnosis in later life, the impact of the condition and your new reality is likely to have an influence on your relationship. As hard as it is for you to live with the condition and fully grasp what this means to you, it is likely to be equally as hard for your better half. When in a relationship we all want to be everything we can be to each other and this is no different when living with periodic fevers. Regardless of whether your partner has been part of your path to diagnosis or you’ve only recently met, it will inevitably be hard for them to see you suffer without knowing how they can help you. Although their reactions may lead you to feel it is best to spare them from what you are going through, could you consider a different approach? As with friends, the key to a supportive relationship is being open and honest with those closest to you about your condition, and helping them to understand what you are going through and how they can help. It is therefore important that you include them in your process and instead of focusing on how your condition impacts you alone, focus on how it impacts you both. One of the best ways to do this would be to invite your partner to your next consultation with your doctor. Hearing from a specialist about the ins and outs of the disease will help them to understand how and when they can help. Instead of them seeing you deal with your disease alone, it can help them feel included in your care.

      Work

      As we all know work can sometimes be very stressful and when living with a rare AI condition it can, for some conditions, such as CAPS and TRAPS in particular, trigger a flare. The potential triggers associated with work as well as the unpredictable nature of the conditions mean that working full-time can be very difficult – however, it is not impossible. To help minimise your condition’s impact on you and your work, it is important that you manage expectations amongst your colleagues and employer to enable a supportive environment. One of the key things you need to do is to educate your employee and colleagues about what the condition is and the impact it can have on your time. Once they understand they are more likely to be supportive, which puts you in a better position to offer solutions and negotiate the terms of your role. Speak to your HR department about your condition and needs and ask them for their advice. Every company is different but in some cases your HR department may suggest to your employer that they put in place flexible working arrangements for you which will allow you to work from home or alternatively that you work your contracted hours outside of normal working hours - just in case you experience a fever during work hours. Discuss who can help you if you become very sick at work, and always allow room in your timelines for sudden flares to enable you and your colleagues to meet deadlines.
       

      How will life change for you with autoinflammatory disease in the family?

      Children with an autoinflammatory disease may find they can’t do everything their friends can do. They may also have to put up with pain and go to therapy sessions and hospital appointments, or even spend prolonged periods in hospital. This can be upsetting, unsettling, and frustrating and lead to feelings of being ‘different’ or standing out from the crowd. These feelings are not always easy to deal with at any age – how well children handle these often depends on how old or mature they are, and comes down to their personality.

      As well as noticing changes to what can or can’t be done, the other thing that may change is the ability to make plans for the future. Often it’s difficult to plan ahead because you can’t predict the severity of the symptoms tomorrow, the next day, the next week, or even the next year. Holiday plans, or even just plans to go out for dinner, may have to be put on hold or decided upon at the last minute. You have to learn to live for the moment and make the most of each day at a time.

      The best approach to dealing with change is to foster a caring and open environment and try to find support for your child and yourself, such as finding people who are going through something similar that they/you can talk to and spend time with. Although difficult, it is also important to try to surround yourself with people who can make an effort to understand your situation, even if they are not living with something similar. It’s also vital to try to make every day seem as normal as possible for your child – let them see their friends, go for a walk, read, watch TV or whatever makes them happy.
       

      Where to seek additional support

        common-symptoms-life3

        If a member of your family has an autoinflammatory condition, you may need additional support. There may be times when the practicalities of everyday life, such as financial struggles and treatment strategies, feel like too much to bear, or you might be looking for support for you or your child’s emotional needs. There is support available for all sorts of the challenges (e.g. treatment support, help with symptoms, support options for children) you may be facing, or may face in the future. Good places to start include your own or your child’s doctor, the hospital department you visit, social services and health insurance providers. You can also seek help from child protection authorities. Friends and family who know you and your needs very well can be an invaluable source of support. And last, but by no means least, you can turn to rare disease support groups who will understand what you are going through.

        The ‘I'm Rare’ project will help you discover more on treatments for periodic fever syndromes

        I'm Rare was created to spread awareness of rare autoinflammatory diseases and develop a network of support and experience-sharing for patients and their families with the specialists who treat them. People with rare autoinflammatory diseases can feel alone, frightened and uncertain about their future. Sharing experiences can help patients feel part of a family.

        I'm Rare is a journey of meetings, video interviews and activities that bring together rare patients, families, healthcare professionals and patient organizations to listen, support and rely on each other, so no one ever feels alone.

        Download the I’m Rare eBook to being your journey.

         Download and Explore our Patient eBooks.

                   230 pages of patient stories and first hand experiences

                  Get advice to help you, if you know someone with a recurrent fever syndrome.

                  Read about the multifaceted burdens of rare autoinflammatory diseases.
         

        Navigating rare autoinflammatory diseases: our commitment to you

        Uncover the complexities of autoinflammatory diseases and learn how we are focused on helping individual through awareness, connection, community, progress and change.