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What should nurses know about EDS to give you or your family member safe, quality care?Percent of participants who mentioned this themeNumber of responsesKath's tagsV- validationM-med info for nsgN- nursing care
2
Listen to us27.47%25V*
3
Pain24.18%22M*
4
Our joints subluxate/ dislocate/ injure easily23.08%21M*
5
Believe and treat our pain21.98%20V*
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Believe and trust what we tell you about our symptoms and needs.19.78%18V*
7
We know our bodies, so please listen to what we tell you when we're concerned, and ask us about our prior experiences17.58%16V*
8
Multi-system issues16.48%15M*
9
Be gentle with us, as we injure easily15.38%14N*
10
Each person with EDS is different15.38%14V*
11
You need to learn about EDS to provide safe, quality care for us. 14.29%13N*
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Don't doubt us when we're concerned about something going on with our bodies13.19%12V*
13
We may not look sick or in pain when we are12.09%11V*
14
Ask us what works on us as individuals before you move us or do something9.89%9N*
15
Dysautonomia9.89%9M*
16
Do a thorough, careful assessment8.79%8M*
17
EDS effects every part of us8.79%8N*
18
Fatigue8.79%8M*
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Gastrointestinal issues8.79%8M*
20
Our symptoms may be different than what you see in other patients. 8.79%8M*
21
POTS8.79%8M*
22
Some medications work differently, or don't work on us.8.79%8M*
23
Some types of anesthesia may not work on us8.79%8M*
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It's not just in my head7.69%7V*
25
Skin fragility7.69%7N*
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We are not faking7.69%7V*
27
We may bave other co-morbid health issues7.69%7M*
28
We've had negative care experiences, which make it difficult to trust you and to ask for help 7.69%7
29
Mast cell activation6.59%6M*
30
Our bodies are different than most people's, so what is safe and effective in most people may not be safe or appropriate for us. 6.59%6M*
31
We're prone to bleeding and bruising easily6.59%6M*
32
Be compassionate5.49%5N*
33
It can be difficult and take time for us to move5.49%5N*
34
Living with EDS is a struggle5.49%5
35
Refer us to experts when you don't know enough5.49%5M*
36
We may have many medication sensitivities. 5.49%5
37
We may have many sensitivities & allergies with significant reactions5.49%5M*
38
We've experienced medical complications5.49%5
39
EDS is a long-term condition: It doesn't go away or get better.4.40%4M*
40
Emotional impact4.40%4N*
41
Our bodies respond differently than other people's4.40%4
42
Vein Fragility4.40%4N
43
We are the Zebras: We may have symptoms and reactions you don't expect or haven't seen in other patients4.40%4
44
We get injured easily and often4.40%4M*
45
Brain fog3.30%3
46
Don't rush us3.30%3N*
47
Healing difficulty3.30%3
48
Sutures may not hold when we have surgery3.30%3M*
49
We may have normal tests and scans despite our symptoms3.30%3
50
We may need opiates to control our pain3.30%3M*
51
We need you on our side3.30%3V*
52
We're not drug-seekers when we tell you we have pain and need relief.3.30%3
53
Advocate for us2.20%2N*
54
EDS impacts our quality of life2.20%2
55
EDS is real2.20%2
56
Headaches2.20%2M*
57
It's often difficult for us to get a diagnosis and proper treatment for our health problems. 2.20%2M
58
We adapt to our symptoms, so they may not be evident on exam.2.20%2N*
59
We are not lazy2.20%2V*
60
We have felt invalidated by providers who don't believe us2.20%2V*
61
You should know how to recognize EDS2.20%2
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60 tags
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143125
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20% of responses44% of responses35% of responses
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Top 10 as of 25/7/19asked for validationsuggested med Ed for Nsgspecific Nursing care requests
67
Pain 36.11%
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believe and Tx pain 27.78%These need to be updated
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we know our bodies 27.78%
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listen 25%
71
Believe us 25%
72
do not doubt concerns 19.44%
73
Sx are varied 19.44%
74
ask what works 16.67%
75
frail skin 16.67%
76
each person is diff 13.89%
77
joint disloc 13.89%
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