For physicians


What does a doctor need to know about chronically ill people?

We are our own specialist when it comes to our body and we do want the doctor to recognize that.

Do not tell us how we are supposed to feel like in your opinion.

Do not belittle our symptoms and do not compare us to cancer patients or sick children. Every disease is bad for the person who has to deal with it.

Understand that we have been disappointed by many doctors and therefore perhaps react more intense if your opinion differs from ours.

Treat us with respect and understanding.

Talk to us at eye level.

As patient we depend on our doctors. That fact leads to an imbalance of forces from the very beginning. It would be great if you were not to take advantage of this position of power.

Tell us honestly if you are overwhelmed with our long history of symptoms and admit if you do not have any more ideas.

Try to read the informations we give you. No patient expects the doctor to know everything.

Do not refuse to hear our ideas just because they are coming from the patients side.

Remember that there are diseases which are hard to diagnose. That doesn’t mean just because you weren’t able to find it (yet) that there is no cause at all. It doesn’t mean the patient has a psychosomatic disease. Basically, it would be nice if you believed in the patient as long as nobody proves the contrary.

Work together with us and try to let go the usual doctors-patient hierarchy.

Connect with other physicians and talk about us (if the patients gives you permission to do so)

We want to get the best out of an appointment and we know that doctors are not infallible and omniscient.
We also understand that our health system does not provide adequate treatment for chronically ill patients and that you are under immense pressure.

We do not expect miracles, but just a little understanding and interest in our disease.

We are grateful for any task you can take of our shoulders.

 

Some friends in my forum created this very good advices:

Please ask us which tasks we expect you to take over and which ones we can handle ourselves.

The tasks that we would like you to take on may differ. It might be the role of the diagnostician, the therapist who offers a specific treatment, the case manager which brings together all reports, the person who documents our symptoms or the advocat who paves our way to other physicians and strengthens our backs throughout social matters. Please let us know what you can handle and what you cannot do.

Ask us which role we can fulfill. See us as the experts for our own body, who can contribute a lot of important things to diagnosis and treatment optimization. Many of us are more than willing to take over parts of the coordination, find recent publications, elicit experts or find out contact data. It feels good to be able to actively be part in our care and not to be helpless. Do not feel threatened by our activeness, recognize it as our strength and a support for you. We are happy to support you as often as we can.

Be curious and think outside of the box. Try to replace the sentence: „This is not possible“ with: „How is this possible?“ See our case as an opportunity to learn. Medicine does not know everything, and in the past the unusual cases often led to a deeper understanding of contexts.

Hold your pride back. Maybe your therapeutic approaches don’t work for us and your knowledge will be on its limits. This can also be frustrating for us. Please do not give us the feeling that we are to blame for your disappointment, for example, because we would not try hard enough. And please try to respect without being disappointed if we do not want to try your therapeutic approaches. Understand that there have been many well-meant advices from therapists in our lives, who were convinced of their therapy, which in the end did more harm than good. We have a wealth of experiences based on our specific case, therefore please respect our decisions.

If you are able to, please accompany us, even if you have no therapeutic approaches for us. We are grateful about experts who keep us in mind, and who tell us if there is a new diagnostic or therapeutic approach; who know us and are there in case our symptoms get worse and who write helpful reports.

If we ask specific questions, please do not see those as annoying. Do not think we would sue you if something does not work out as it should. Many of us have a doctors-odyssey behind them and made the experience that they only way how things improved was to actively take part in our health management.
During our lives we had to make a couple of rough decisions when it came to our disease. We had to evaluate what is good for us and what not so much. Please let us be part of your thoughts and let us decide together which treatment is right for us. We might have to live a lifetime with the consequences of the decision we made, so please let us participate.
Information for beginners concerning Ehlers-Danlos Syndrome and Comorbidities:

This book offers a great overview about EDS hypermobile type and comorbidities:

Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome (Englisch)
von Brad T Tinkle (Autor)
http://www.amazon.de/Hypermobility-Handbook–Management-Ehlers-Danlos-Syndrome/dp/098257715X/

Overview Publication EDS HT:

Levy HP. Ehlers-Danlos syndrome, hypermobility type.
Mast Cell Activation Syndrome (MCAS):

 

Afrin LB. The presentation, diagnosis and treatment of mast cell activation syndrome. Curr Allergy Clin Immunol. 2014 Sep;27:146-60.

 

Neurological problems:

 

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos syndrome (s): A review. Iranian journal of neurology. 2014 Oct 6;13(4):190.

De Wandele I, Rombaut L, Leybaert L, Van de Borne P, De Backer T, Malfait F, De Paepe A, Calders P. Dysautonomia and its underlying mechanisms in the hypermobility type of Ehlers–Danlos syndrome. InSeminars in arthritis and rheumatism 2014 Aug 31 (Vol. 44, No. 1, pp. 93-100). WB Saunders.

 

Cranio-cervical Instability (CCI):

 

Milhorat TH, Bolognese PA, Nishikawa M, McDonnell NB, Francomano CA. Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and chiari malformation type I in patients with hereditary disorders of connective tissue.

Felbaum D, Spitz S, Sandhu FA. Correction of clivoaxial angle deformity in the setting of suboccipital craniectomy: technical note. Journal of Neurosurgery: Spine. 2015 Jul;23(1):8-15.

Henderson FC, Wilson WA, Mott S, Mark A, Schmidt K, Berry JK, Vaccaro A, Benzel E. Deformative stress associated with an abnormal clivo-axial angle: a finite element analysis. Surgical neurology international. 2010;1.

 

The new EDS criteria and an overview of all known comorbid conditions have been published in 2017:

http://www.holy-shit-i-am-sick.de/ergebnisse-der-internationalen-eds-konferenz-2016/

 

Great lecture about EDS and CCI:

http://ehlers-danlos.com/2015-annual-conference-files/Henderson_0.pdf

http://www.csfinfo.org/research/csf-funded-research/csf-craniovertebral-instability-colloquium/craniocervical-flexion-deformity-hypermobility-syndrome/

 

Social consequences:

Eurodis Care Study
Ehlers-Danlos Syndrome
Sections of this chapter were written with the collaboration of the Association Française
des Syndromes d’Ehlers Danlos and Associazione Italiana per la Sindrome di Ehlers-Danlos (A.I.S.E.D.).
http://www.eurordis.org/IMG/pdf/voice_12000_patients/DIS_Ehlers_Danlos_Syndrome.pdf

Up to date presentations:

http://ednf.org/2015-annual-conference
In my opinion this is the minimum of information every doctor who treats EDS patients should have to have an overview about the full consequences of EDS.

Information for beginners concerning cervical spine instability:

 

Dvorak J, Penning L, Hayek J, Panjabi MM, Grob D, Zehnder R. Functional diagnostics of the cervical spine using computer tomography. Neuroradiology. 1988 Apr 1;30(2):132-7.

Dvorak J, Schneider E, Saldinger P, Rahn B. Biomechanics of the craniocervical region: the alar and transverse ligaments. Journal of Orthopaedic Research. 1988 May 1;6(3):452-61.

DVORAK J, PANJABI M, GERBER M, WICHMANN W. CT-Functional Diagnostics of the Rotatory Instability of Upper Cervical Spine: 1. An Experimental Study on Cadavers. Spine. 1987 Apr 1;12(3):197-205.

DVORAK J, HAYEK J, ZEHNDER R. CT-Functional Diagnostics of the Rotatory Instability of the Upper Cervical Spine: Part 2. An Evaluation on Healthy Adults and Patients with Suspected Instability. Spine. 1987 Oct 1;12(8):726-31.

Panjabi MM, Nibu K, Cholewicki J. Whiplash injuries and the potential for mechanical instability. European Spine Journal. 1998 Dec 1;7(6):484-92.

Henderson FC, Wilson WA, Mott S, Mark A, Schmidt K, Berry JK, Vaccaro A, Benzel E. Deformative stress associated with an abnormal clivo-axial angle: a finite element analysis. Surgical neurology international. 2010;1.

 

This is a great lecture about how to treat CCI! It is not only interesting for EDS patients but for all people who suffer from cervical spine instabilities:

Unique Manual Physical Therapy Approach To Treat Craniocervical Instability & Chiari

Dr. Michael Healy – Chiari Syringomyelia Foundation

http://csfinfo.org/videos/physician-lecture-videos/csf-lectures-archive/physical-therapy-craniocervical-instability-chiari-csf/