The document summarizes the results of a 30 question poll of 66 people about their experiences living with TRAPS syndrome. TRAPS, or TNF Receptor-Associated Periodic Syndrome, is a rare autoinflammatory disease caused by a mutation in the TNFRSF1A gene. The poll asked about demographics, symptoms, treatments, impact on work/school, and other health conditions. Key findings included that the majority of respondents were female, from the US or Europe, and were diagnosed after visiting multiple doctors. Common symptoms included fever, rashes and joint/muscle pain. TRAPS episodes typically lasted 1-3 weeks and greatly impacted respondents' ability to work or attend school.

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1 | R a r e C o n n e c t . o r g
Living with TRAPS
Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as
Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is
caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from
the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with
the disease in order to understand the experiences of people living with this rare disease. The poll
was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community
on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The
charts below is the summary data from those participants responses.
We would like to thank Julia Gajentaan, Karen Durrant of the Autoinflammatory Alliance and Dr.
Anna Simon for their support.
a person living with
TRAPS
38%
parent of someone
living with TRAPS
55%
caregiver/advocate
for someone living
with TRAPS
7%
The person filling in this form is:

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2 | R a r e C o n n e c t . o r g
Male
40%
Female
60%
Gender
27%
17%
21%
15%
17%
3%
Age
0-10 years
11-20 years
21-30 years
31-40 years
41-50 years
Over 50 years

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3 | R a r e C o n n e c t . o r g
United States
46%
Italy
13%
Spain
12%
France
5%
Australia
5%
United Kingdom
3%
Canada
6%
Germany
8% Denmark
2%
Country of residence
68%
20%
3%
4%
5%
0%
Age when first ill with TRAPS
0-10 years
11-20 years
21-30 years
31-40 years
41-50 years
Over 50 years

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4 | R a r e C o n n e c t . o r g
1 year or less
17%
2-3 years
18%
3-5 years
8%
5-10 years
18%
10 or more years
39%
How long did it take you to receive a
diagnosis?
1 doctor
1% 2 doctors
10%
3 doctors
13%
4 doctors
12%
5 doctors
2%
More than 5
doctors
62%
How many doctors did you visit before an
accurate diagnosis was made?

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5 | R a r e C o n n e c t . o r g
0
5
10
15
20
25
30
35
40
45
50
What kind of doctor are you currently
seeing to manage your TRAPS
symptoms? (Check all that apply)
Yes
70%
No
20%
In process, waiting
for results
9%
A family member
was tested
1%
Do you know your mutation?

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6 | R a r e C o n n e c t . o r g
Yes
32%
No
32%
Unsure
36%
Does anyone else in your family have TRAPS?
If YES you know your mutation, please mention....

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7 | R a r e C o n n e c t . o r g
0
5
10
15
20
25
30
What treatments are you currently taking for TRAPS syndrome? (check all
that apply)
0
10
20
30
40
50
60
What symptoms do you have during TRAPS
episodes? (check all that apply)

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8 | R a r e C o n n e c t . o r g
1 day
0%
Up to 1 week
29%
Up to 2 weeks
27%
Up to 3 weeks
29%
1 month
or more
15%
How long do your TRAPS episodes typically
last?
1 day
0%
Up to 1 week
9%
Up to 2 weeks
15%
Up to 3
weeks
29%
1 month or
more
47%
What was the duration of your longest flare
of symptoms?

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9 | R a r e C o n n e c t . o r g
elevated CRP
45%
elevated ESR
17%
both elevated
CRP and ESR
10%
none of the above
14%
other
14%
During a flare or TRAPS episode, do you
experience:
Yes
46%
No
21%
Sometimes
33%
Do you experience symptoms outside of the
TRAPS episodes?

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10 | R a r e C o n n e c t . o r g
Yes
85%
No
15%
Does TRAPS affect your work and/or school
performance?
If YES to the previous question, please share how TRAPS affects work/life:
Original, Unedited Answers:
-it has disabled me.
-Before treatment it caused a large amount of missed school, and poor performance. Now, with
treatment, I sometimes avoid stressful trips for work and sometimes I get breakthrough symptoms.
-My son has missed school due to TRAPS.
-I've missed both school and now work. I am afraid I will not be able to keep my job.
-Very tired easily especially during fevers, very irritable during flares.
-During a flare - bed ridden and typically delirious with fever for a week. Nothing happens other than
moving from bed to bath. The week following a flare she is extremely tired and exhausts easily.
School is compromised during that week too but not to the same extent as the fever episode. In a
lead up to a flare, very tired, lethargy, aches and pains begin. Becomes difficult to do a whole day at
school and/or extra curricular activities. Outside of a flare there can be episodes of joint pain that
prevent her from walking, running, dancing, riding. These episodes stop or disrupt day-to-day
activities depending which joints are affected.
1/4

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11 | R a r e C o n n e c t . o r g
-Can no longer work..too tired and the stress brings on a flare
-Misses alot do to fever and weakness
-when she has pain in legs she wont walk or play. teachers are unaware of disease so sends her home
from school when she has fever/rash.
-Makes my son very emotional, which makes it difficult to participate at preschool.
-It affects. Her education. To many days of school miss so she miss out
-Because flares are so long, as long as my son can drag himself out of bed, he goes to
school/work....graduated high school on time because he is smart.......extremely difficult.......no social
life.
-Part time working - max 20 hours a week
-"I have debilitating flares every couple of months. Often the knees become so inflamed they have to
operate., I get sterile like abscesses and haematomas that need to be surgically removed.,
-I'm in constant pain.,"
-I was forced to quit my job.
-At times outside of a flare, my 3 year old will experience random symptoms if she is a little ran down.
If affects her social skills as she does not want to interact with peers at all & is quite irritable and
intolerant to her usual self. It changes her personality. She also misses alot of day care which she can
only attend 2 days a week due to flares and being ill on and off. Any social activities that we commit to
are always affected as she misses them as soon as she becomes unwell. Sometimes it feels like we can
make 3 steps forward in a matter of 3 weeks and then we take 1-2 back once she becomes unwell
with TRAPS episode. She also seems to have alot less stamina day to day than other children her own
age.
-Before I was on kineret I missed a lot of work and lost my job
-It did prior to treatment. Prior to treatment, I could not exercise, participate in sports. I forced myself
to go to work and school, but was often miserable and suffered greatly to do so.
-Misses a lot of school due to attacks
-Excessive school and recreational absences during active periods
-I can not do it anymore.
-when he used to get flares, he was totally not able to do any schoolwork or really anything else. He
could barely come to eat at the kitchen table. Bed-that's it!
-Many missed days
-Fatigue. Headaches and joint pain, stomach issues that can affect school and/or gym training.
-pain, sick too often, and loss of balance
-It did affect both. missed a lot of school and only worked part time.
2/4

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12 | R a r e C o n n e c t . o r g
-She can't go to school when in a flare. Effects her sports as well.
-my daughter can't go to school when on flare
-I'm fully disabled because of my TRAPS
-missing work, missing social events, fatigue
-While she can attended school for the most part, she did miss over 20 days last year. She also cannot
participate in athletics because excessive physical activity can lead to a flare.
-I have had to quit my job due to the severity of the symptoms. It severely limits my mobility and
ability to participate in activities I once enjoyed.
-Unable to do schoolwork for weeks at a time.
-after 2 years of continuous fever (37.5) .. routine activities start to feel terrible
-I lost a sedentary job because of the many sick days. Any manual work on the joints (fingers, wrists,
knees, ankles) or contact with those body parts is painful. I have trouble handling things well, reading
turning the key in the lock, cutting meat. Physical fatigue. The sentimental and sexual life suffers.
Social life is reduced to my physical abilities.
-School, sports affected
-In the absence of drug treatment, fatigue, difficulty concentrating, frequent inflammations, the
constant stomach problems, gastroesophageal reflux, and especially joint pain make me very sick in
everyday life
-Pain and excessive fatigue prevents me from doing all smoothly and calmly.
-During relapses I can't work
-Sports activities hardly possible to occasionally fail at work
-Because of so much sick leave, my employer has not always been so much understanding. The leisure
plans come after the health needs.
-Weakness, pain in daily life
-medical visits, loss of income, sometimes unable to do physical work, generalized fatigue ...
-Non-attendance
-My social and working lives are a mess. Domestically, I depend on people to help me. There is
increasing pain and nothing mitigates
-Fatigue, malaise and joint pain
-fevers keep me in bed. Fever is the most disabling.
-I was being assessed for disability. Pain that I have every day is also caused by fibromyalgia.
-Low energy
3/4

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13 | R a r e C o n n e c t . o r g
No
79%
Yes
21%
Have you ever participated in a clinical trial
for TRAPS syndrome?
-I have absolute invalidity. I had to stop working because many days sick. Many simple but repetitive
movements of my body are difficult. I feel sore and tired
-Difficulty walking, often depressed. At night, I often go to the toilet. I have difficulty sleeping because
of sweats.
-I can not work, it is difficult to move because of constant pain.
4/4

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14 | R a r e C o n n e c t . o r g
Yes
10%
No
76%
Unsure
14%
Have you developed amyloidosis as a result
of TRAPS syndrome?
Yes
34%
No
66%
Have you had a pregnancy or fathered a
child?

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15 | R a r e C o n n e c t . o r g
Yes
71%
No
11%
Unsure
18%
Have the manifestations (symptoms) of
TRAPS syndrome changed throughout your
life as you have gotten older?
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
Less
frequent
flares
Less severe
flares
More
frequent
flares
More severe
flares
Other
(please
specify)
If you answered YES to the previous question, how have
your symptoms changed? (Check all that apply)

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16 | R a r e C o n n e c t . o r g
Yes
19%
No
81%
For WOMEN, if you have been pregnant, did
you experience flares during pregnancy?
Episodes appear
during menstrual
cycle
37%
Episodes are not
associated with
menstrual cycle
63%
For WOMEN, do you notice a connection
between TRAPS episodes and the menstrual
cycle?

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17 | R a r e C o n n e c t . o r g
No
79%
Yes
21%
Have you had any surgeries for
inflammation?
What other health conditions do you have in addition to TRAPS?
-frontal lobe brain damage
-Avascular Necrosis due to prednisone, left hip replaced
-Allergies
-Seizures, Apraxia of speech, regression of speech and motor, spots of disorganized activity
on the frontal lobe, tethered spine, left leg delay, left side arm posturing up during activities
which is related to neuro issues.
-Coeliac, IgA absent, mitral heart valve prolapse
-Idiopathic Severe Chronic Neutropenia
-Asthma, allergies,...
-Behcet-like symptoms
-"Ehlers Danlos Type 3
-Acid Reflux"
1/2

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18 | R a r e C o n n e c t . o r g
-My daughter has alot of food intolerances & allergies.
-remission of amyloidosis; otherwise, none. Half marathoner with treatment for TRAPS :)
-supraventricular tachycardia
-waiting on results
-tinnitis
-Reflux, IGA deficient
-Amnesia,ARTHRALGIA,TENSION HEADACHES, CHRONIC,POSTCONCUSSION
SYNDROME,TRAUMATIC BRAIN INJURY,Ataxia
-Thyroid issues
-Diabetes (Type 2), Asthma, GURD
-intolerance to cold, especially air conditioners, indoor pools (chlorine?) make me sick
-I also have psoriatic arthritis.
-FMF
-Hashimoto's thyroiditis
-I have to muckle Wells syndrome
-Chronic asthma, fibromyalgia, severe pain and migraines. all diagnosed
-osteoporosis
-fibromyalgia, chronic asthma, drug intolerances, allergies and migraines .... several hot.
remember from my childhood a day that did not have any pain.
-Trigeminal Neuralgia
-I have problems in the deep venous system in my legs, which has caused me many varicose
veins and edema by poor circulation return. I always thought that results eel TRAPS, like
other ailments I have had and have, like, plantar fasciitis, sd carpal tunnel, disc protrusion in
cervical, muscle spasms in back, epicondritis on both elbows, arthritis in knees ankles,
intoleran food ia, small hiatal hernia, etc
-multiple sclerosis
-bronchial asthma
-thyroid (removal of a goiter multonodulaire and suspected cancer), pulmonary embolism
-Tachycardia Cancer of the thyroid in remission Endometriose
2/2

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19 | R a r e C o n n e c t . o r g
Yes
54%
No
46%
Are there other family members that have
other rheumatic conditions? (ex. lupus,
osteoarthritis, gout, etc.)