#EDSBlogChallenge (Part 2)

Chronic Illnesses, Invisible illnesses, Uncategorized

Hi Guys,

If you are just tuning in and missed my initial post or want to get involved in the challenge you can still find the questions on my first  #EDSBlogChallenge post.


  1. What are your top 5 coping tips?
  • Stay hydrated with water
  • Eat small but frequent meals
  • Take naps or rest when possible
  • Be honest with other people about your limits
  • Use natural remedies like lavender and mint to help with physical pain

  1. What are your top 5 goals you want to accomplish despite your chronic illness(es)?
  • Complete my placement year in Marketing
  • Finish my degree with a 2:1 minimum
  • Travel to two countries in the next two years
  • Keep blogging as a hobby
  • Spend more time with my friends and boyfriend making special memories

  1. How do you stay motivated in your daily life?
  • I try to keep my mind occupied on University work
  • Reading books when I can focus
  • Writing whilst watching films or listening to music
  • Giving my pet rabbit and my boyfriend’s dog cuddles
  • Talking to friends and using Facebook support groups for Ehlers-Danlos
  • Asking support from people when I am having bad flares

  1. What do you want people to know the most about your life with EDS?
  • It isn’t just a joint problem that makes me look young, it is a joint problem that affects my daily life in most things I do.
  • The chronic fatigue part of it is insane and pain in one area may be different and a different severity to another part another day.

  1. When did you first start thing that the dislocations/subluxation extreme flexibility etc. could be related to a real problem?
  • Around 22-23 years old when I stopped working as a Waitress I noticed the pain heightened considerably and I became very weak.

  1. Did your related diagnoses come before or after your EDS diagnosis?
  • Photosensitivity, IBS, nut, gluten and lactose allergies, oral food syndrome and a vitamin D insufficiency came before and chronic bladder syndrome, an increase in mast cells came after.
  • My pots test came back inconclusive and I am waiting to be tested for MCAD, Chrones and celiac disease

  1. What is your biggest pet peeve about trying to explain EDS?
  • Many people think I am lucky when I explain that I am hyper-mobile and switch off when I try to explain it is much more than that.

  1. How has being sick impacted your relationships?
  • Some relationships have become stronger and some weaker. I am shyer to make new friends and talk to new people as I am worried I won’t be able to sustain new friendships.
  • I have found a boyfriend who accepts me for who I am and understands I can’t do everything and I have become closer with my family.

  1. What was your initial thoughts about being diagnosed?
  • I was such a mix bag of emotions!
  • I was happy to find out I had EDS but I thought that was the end of it. I realised it was just the start of a long journey to find out what else was lurking behind the wood works having very big digestive and bladder problems.
  • However, I am happy the doctors are more willing to find out what is wrong and try to make me feel better

  1. What healthy habits have you adopted since being diagnosed?
  • To be honest this is still a massive work in progress. I still smoke and drink alcohol but I have cut down considerably (more on the alcohol part).
  • Any form of exercise hurts and tires me out massively but I am going to try and start a full-time job for a placement in July
  • I am eating healthier eating more fruit and vegetables and making sure get lots of rest.

  1. How do you feel about your current treatment plan?
  • My current treatment plan isn’t very good as I am back taking Tramadol and a few other tablets and strong vitamins.
  • I was meant to do the 3 week intensive therapy course at RNOH but I currently am struggling to stay up 9-5 to do this.
  • I am also waiting for planning instillations and I am having an Endoscopy soon. I feel once I see a mast cell specialist the EDS will get better if I can block out some flares.

  1. What do you think is the most misunderstood aspect of EDS?
  • That it is even an illness(to those who don’t know what EDS initially is)
  • for those who do I find they think all the types are the same and even people with the same types have the same issues

  1. What are your top things to pass time when you’re stuck in bed?
  • Eat and sleep!
  • Watch Netflix
  • Text or speak to friends on the phone
  • Blog or do Uni work
  • Smother (I mean cuddle) my boyfriend

  1. What is your favourite motivational quote and why?
  • It does not matter how slowly you go as long as you don’t not stop.
  • I love this quote because it shows that resistance is key and no matter how long something takes if your determined you will get there in the end

 Sharing is Caring

Please help me in my quest of raising awareness of EDS by sharing this post


Have your Say 

Do you have EDS or know anyone with it with similar or different experiences – then why not comment below?


Like what you see?

Join me on my journey

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Thanks for Reading

Lots of Love,

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#EDSAwarenessMonth Blog Challenge

Chronic Illnesses, Invisible illnesses

 

zeb

Hey Guys,

As the sun is shining it is clear summer has started … but for those of you who don’t know  May is also Ehlers-Danlos Syndrome Awareness Month.  As University is winding down for the year I am hoping to get back in the swing of blogging.

I found the #EDSAwarenessMonth Blog Challenge by Kali at  This Spoonie Speaks. I have decided to participate but please bare with me as I catch up… To begin I will answer the first six questions but if any of you fellow Zebras want to participate in the challenge, I have listed the questions at the end of this post.

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1.Introduce yourself and explain what type of EDS you have.

I am Morgan, quarter of a century old in my second year studying BA (Hons) Business and Management at Oxford Brookes.  From my knowledge there are 13 types of recognised EDS, but I have the most common type which is type III known as hEDS. I was diagnosed with EDS at 23 years old by a rheumatologist but I had showed signs from an early age.

One of reasons why I was not diagnosed earlier is because hEDS does not have a specific blood tests and symptoms can vary between patients.  However, there are more stringent guidelines for diagnosing EDS now, known as the Beighton Score.

You don’t need to wait to see a doctor to see if you can do the 9 tasks you will be asked to perform when seeking an official diagnosis.  I don’t remember my Beighton score but I remember it being relatively high with more flexibility in my upper body ( you don’t need to be able to pass all 9). My lower body has become more flexible over the last two years.However, a common misconception is your only symptom is hEds is hyper-mobility.  My other main symptoms of EDS are joint pain,  bladder and bowl pain, chronic fatigue, bruising, problems absorbing vitamins and severe photo sensitivity.


2. What other illnesses do you have that are related to your EDS?

It is common for EDS to coexist with other conditions, however this is not always the case.  Unfortunately, for me this is not clear cut.

I suffer with multiple allergies and gastroenterology issues which are still under investigation. I was born lactose intolerant and then developed allergies to gluten, nuts, tree pollen, grass pollen cats and nickel being sensitive to numerous other products and being diagnosed with oral food syndrome and IBS.

I am suspected to have Crones or Celiac Disease but have not been able to intake gluten for 6 weeks to be tested. I have also been waiting over a year to see a mast cell specialist and bladder instillation’s due to chronic bladder syndrome.  When I was younger I suffered a lot with urine and bacteria infections associated with eating certain foods. My POTS test came back inconclusive but I I an renown for  low blood pressure.


3.How long did it take you to get your diagnosis? How many doctors did you see?

After my brother suspected I had EDS it took me about a year to get an official diagnosis. However, my parents paid for me to go privately as my GP was convinced it was all in my head despite my brothers diagnosis and similar symptoms for years. Initially I saw a Rheumatologist but due to  the time of my diagnosis and the changes in EDS regulation I saw another one on the NHS to confirm I did  have EDS.


4. What do you want newly diagnosed EDS-ers to know?

Its okay to feel relieved when you receive a diagnosis but also overwhelmed.  The difference is know you have the resources and language to help you start recovery when you are ready. However, do not expect a diagnosis to be a quick fix, the NHS has long waiting lists and you may find a EDS diagnosis is the start of your journey to rule out other conditions.

Although it may not feel like it a label can help you out in so many ways. It can make your GP more understanding, support you apply for mitigating circumstances in your studies and your employer is likely to let you take more short-breaks.  I would say don’t try and figure everything about EDS in one day because this can leave you panicked or frustrated. You can find a local support group, or if you have a busy life or feel unwell social media has many virtual ones online. I find because everyone experience of EDS is not always the same I prefer to listen to specialists, but I know this does not work for everyone

It is all about finding out what works for you!


5. How have you adapted to your diagnosis?

I am still coming to terms with my diagnosis because mental health plays a big part in a physical illness and stress makes joint pain worse for me.  The biggest change is now knowing I cannot keep up with everyone else and going out one day will make me tired for two.  My life is having really productive days and long periods of nothing.  I am trying to get into a routine to do a 3 week inpatient physical therapy rehabilitation course at RNOH I have started taking Tramadol, Codiene and co-codamol when the pain becomes unbearable again.I also consume loads fizzy drinks for bursts of energy – Although, I don’t recommend this.

Hot water is my best friend and I find I always have a hot water bottle to hand and take multiple showers a day because  heat helps loads.   I am soon to be go back to full-time work properly for the first time in years but I will keep you posted on this – As I am still spending loads of time in bed.


6. How has EDS changed your life for the better? 

I am not going to lie to you and say EDS has changed my life for the better overall but it does have some positives.

Firstly, it helped me become an EDS advocate and find this hobby of blogging, sharing my experiences to help others.  Secondly, EDS has brought my family and I closer together because now they understand I am not being a drama queen and I am actually in pain.  Although I have lost friends by staying inside I have found by being in pain all the time I now found I appreciate the special memories I make with my friends and boyfriend.


Sharing is Caring 

Please help me in my quest of raising awareness of EDS by sharing this post.


Have your Say 

Do you have EDS or know anyone with it with similar or different experiences – then why not comment below? 


Like what you see? 

Join me on my journey;

Facebook page

WordPress

Twitter 

Instagram

Pinterest


 #EDSAwarenessMonth Blog Challenge Questions 

  1. Introduce yourself and explain what type of EDS you have.
  2. What other illnesses do you have that are related to your EDS?
  3. How long did it take you to get your diagnosis? How many doctors did you see?
  4. What do you want newly diagnosed EDS-ers to know?
  5. How have you adapted to your diagnosis?
  6. How has EDS changed your life for the better?
  7. What are your top 5 coping tips?
  8. What are your top 5 goals that you want to accomplish despite your chronic illness(es)?
  9. How do you stay motivated in daily life?
  10. What do you want people to know the most about your life with EDS?
  11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?
  12. Did your related diagnoses come before or after your EDS diagnosis?
  13. What’s your biggest pet peeve about trying to explain EDS?
  14. Has being sick impacted your relationships?
  15. What were your initial thoughts about being diagnosed?
  16. What healthy habits have you adopted since getting diagnosed?
  17. How do you feel about your current treatment plan?
  18. What do you think is the most misunderstood aspect of EDS?
  19. What are your top things to pass time when you’re stuck in bed?
  20. What is your favorite motivational quote and why?
  21. What is your favorite piece of medical equipment that you own?
  22. What things have you learned from being chronically ill?
  23. What was your worst medical setback? How did you overcome it?
  24. What was your worst encounter with a doctor?
  25. What is the worst unwanted advice you’ve ever gotten?
  26. Have you found books that have helped you cope with being chronically ill?
  27. What would your coping advice be to friends or family of someone who’s chronically ill?
  28. What is the strangest question you’ve ever been asked about EDS?
  29. Do you think changes to your diet helped or contributed to your symptoms or the severity of them?
  30. What has been your biggest outlet to help deal with being sick?
  31. What are your favorite memories from EDS Awareness Month?

 

 

 

Through the Nutritionists’ Eyes: The Ehlers Danlos Series

Guest Posts, Invisble Illnesses, Peeping through the Keyhole, Physical Illnesses

Hola Amigos,

When I started Brains & Bodies,  I did not want to accept  guest posts from practitioners, mainly because of the challenges I had with them. Sara Russel is an exception, as she is a practitioner diagnosed wit HDS.  Sara shares my goal to raise awareness about Ehlers Danlos Sydrome/ HDS.   You can look forward to Sara and  I,   collaborating  on Nutrition in the Ehlers Danlos Series.

Sara post is not short, but is certainly a worthwhile read. Time to pass you over. . . See you soon

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Common Ethical Issues People with EDS/HSD Encounter in Healthcare

This guest post aims to provide a sort of exposé of some of the ethical issues (both deliberate and unintentional on the part of health care providers) that people with EDS/HSD and other chronic and complex conditions encounter. Additionally, it offers some reflections on how both patients and care providers can work towards an alternative paradigm and different strategies.

In a sense, because of the extraordinarily complex, multi-faceted and poorly understood etiology, symptomatology and complications inherent in the Ehlers-Danlos Syndromes (which I’ll refer to here collectively as “EDS”) and the relatively newly-coined Hypermobility Spectrum Disorder, the EDS/HSD population can serve as the ultimate example of how often-hidden flaws in the health care system can have an amplified effect on people with chronic and complex health conditions. This piece focuses on selected of ethical problems, while recognising that the impact of course is much more vast.

The information contained in this post results from extensive reading of the medical and scientific literature, personal experience as a patient diagnosed with Hypermobility Spectrum Disorder, clinical experience as a nutritional professional working with a diverse set of chronic and complex health conditions and interviews and conversations with patients with EDS as well as health care providers, both those that are specialised in the treatment of EDS and those who are not.


Common complaints I hear from people with EDS/HSD about their past or present care

“The doctor couldn’t account for my physical symptoms and wrote them off as nonexistent or psychological”.

Depression, anxiety and related disorders, while not specific to EDS/HSD, are more common in these groups than in the general population (Bulbena et al. 2017). The reasons are complex and are likely a combination of co-causative factors (hypermobility is postulated to have effects on the nervous system and the gut-brain axis that profoundly affect emotions), effects of symptoms (pain and fatigue can definitely cause anxiety and depression) and perpetuating/aggravating factors (depression and anxiety increase pain).

Iatrogenic factors, including over- and under-medication, delay in diagnosis, inappropriate medications and more, can cause varying degrees of anxiety, depression and other symptoms, including post-traumatic stress disorder.


“I was denied pain medication when in excruciating pain and was treated like a drug addict”.

EDS and HSD patients often suffer from a high degree of pain which may not be easily recognised or validated. EDS patients frequently report going to the emergency room for a painful dislocation or subluxation and being denied pain medication even after describing debilitating pain. Uncontrolled pain, especially frequent or chronic, can have a profoundly negative impact on quality of life and can cause severe emotional and psychological distress.

“I was over-medicated with pain medications that didn’t lower my pain but only gave me side effects, and my doctor refused to consider any alternatives”.

As the president of a non-profit that connects EDS patients with EDS-focused medical providers noted in a personal conversation, a large percentage of patients with EDS lack the receptors to make opioid pain medications effective, yet these remain widely prescribed for pain management, and often patients become addicted to the medication while continuing to live in pain.

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She described to me her experience of supporting EDS patients who experienced opioid addiction and uncomfortable side effects, including exacerbation in digestive symptoms (poor intestinal motility, constipation, gastroparesis, etc.), personality changes, reduced judgement and reduced cognitive functioning (increased “brain-fog” – which is already a concern for many hypermobile individuals in the first place). Some of these patients, she told me, have gone through painful withdrawal symptoms and required a lot of medical and emotional support to overcome their addiction. It is impossible to estimate how vast this problem is, considering that many people with EDS/HSD struggle with severe pain yet do not have a diagnosis.


“One or more health care providers exploited me financially on the basis of my poor health and desperation for relief”.

Unmanaged or poorly managed symptoms can make people with EDS/HSD the target for deliberate or unintentional exploitation by health care providers promising or implying all kinds of miracles, and even suggesting that EDS is caused not by genetics but by other factors that can be “cured” easily (of course, with the specific product that the company or individual is trying to sell, or a specific treatment modality the person or company offers. Exploitation of people with EDS may take the form of “friends” pushing the latest cure-all essential oils, proprietary supplements, detoxification or cleansing programs, etc.).

business-money-pink-coins

I’m not saying by any means that people with EDS/HSD can’t benefit from the product and service categories listed above. However, I advise people suffering from EDS/HSD to be wary of any health care practitioner, product or program that offers an easy or miraculous “solution” or a one-size fits-all approach. It is in fact very important for practitioners to approach every hyper-mobile individual as a unique person who requires an individualised plan to manage symptoms and improve or maintain their quality of life, and of course, who can help set realistic goals based on the person’s unique and changing conditions.


Solutions: What Practitioners and Patients Can Do

Why Health Care Providers Must Take a Complete Health History

A patient-centred, multi-disciplinary approach to care is critical. The health care provider must understand their patients’ health history and family history, and this involves careful listening, research and often a referral to an experienced specialist if the hyper-mobile patient is still undiagnosed.

Understanding that physical health problems cause emotional distress

Those who suffer from chronic physical symptoms that impact quality of life significantly may also have some anxiety and/or depression. Often, however, this is the only diagnosis they have, as if nothing else were wrong. Unfortunately, this implies that the physical symptoms don’t really exist. The patient knows better. Patients who are in pain and are told that she suffers exclusively from a mental illness will neither be fooled nor trust the physician.

Yet having physical pain and debilitating fatigue that others don’t see or understand is enough to trigger anxiety or depression in an otherwise well-adjusted person. As many hyper-mobile individuals describe, each in their own way, the true problem is very clear to them in their bodies,but nobody sees or understands it. Labelling a complex set of physical and emotional symptoms with a psychiatric diagnosis will only further the mutual reinforcement of physical and emotional symptoms.

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Ultimately, being treated this way over and over again leads to a general mistrust of healthcare, which may in turn increase one’s vulnerability to exploitation by predatory marketing, which often does invest resources in making patients feel understood, not with the aim of solving a problem, but of selling a product or service regardless of its efficacy. The only real way to counteract this is for allopathic and holistic health care practitioners to listen to the patient and to collaborate with each other.


High Ethical Standards and an Individualised Approach

High ethical standards and a bio-individual approach to health must go hand in hand. If your practitioner doesn’t have high ethical standards, you may find yourself buying large packages in a moment of weakness, or arrive home from each visit with loads of supplements that don’t make much of a dent.

If this has ever happened to you, it doesn’t mean that your practitioner intentionally exploited you. It’s more likely that he applied common marketing techniques that brought him money without improving your health. The money-centred model of care doesn’t work well with complex health cases. Nonetheless, most practitioners really believe in their process, in their protocols and in the products they sell.

Practitioners working or wishing to work with people who are hyper-mobile should bear the following in mind. Hyper-mobility is a multi-factor problem with complex etiologies and consequences, and exists on a very broad spectrum, and oversimplifying it is both disingenuous on the part of the person doing so and stigmatising for people who are affected by a complex and non-fully-remitting hyper-mobility.


People with hyper-mobility should be wary of statements such as:

“I am better (or healed) because I did X, so you can get all better too if you’d only stop doing Y and do X like I do”

“I have (or had) a patient (or client or customer) with Ehlers-Danlos Syndrome who went through my program (took X supplement or medication or essential oil or protocol, etc.) and is now fine, so what are you waiting for?”

“All symptoms of Ehlers-Danlos Syndrome match perfectly with Lyme disease (or mold illness or mercury poisoning or copper dysregulation, MTHFR, etc.), so your diagnosis must be wrong, and I can fix it with X.”

redYou get the idea, right? This may not be a comprehensive list of red flags to look out for, but it’s a start. You may even have heard variations on several. I’m not saying that a person with Ehlers-Danlos Syndrome can’t be incorrectly diagnosed, or is exempt from also having another condition with similar symptoms.

In fact, hyper-mobile people sometimes do get Lyme disease or have mercury poisoning or dysregulated copper, but implying that EDS isn’t a distinct medical entity is ignorant and dismissive at best, predatory at worst, but probably most often some combination of the two.


A Paradigm of Service

Both allopathic and holistic health care providers should approach their work from the standpoint of service to the patient or client. All too often, allopathic medical care feels rushed and non-empathic, while holistic care can feel to salesy or gimmicky. Neither of these approaches works well for the patient.

Ultimately, patients with complex illnesses, including EDS/HSD, do best in a multi-disciplinary situation where there is a patient-centred approach to care and an attention to the individual history, symptom picture and the elements that bring relief or trigger discomfort. The constellation of dysfunction in the body can vary from patient to patient, but clearly, an attention to each patient’s unique situation can help determine which practitioners are best suited to be part of the care team, so that the best possible support is offered to the patient.

About the Author

Optimized-Sara Russell

Sara Russell is a Nutritional Therapy Practitioner who works remotely with clients worldwide, specialising in complex cases. Sara comes from a family with a high prevalence of joint hyper-mobility and related medical conditions. She resides in the Tuscan countryside with her husband and six-year-old son. To learn more about Sara’s work and read her blog click here.


Related Post on Brains & Bodies 

My Invisible Illness ft Tramadol: The Ehlers Danlos Series


Selected Bibliography

Bulbena A, Baeza-Velasco C, Bulbena-Cabré A, Pailhez G, Critchley H, Chopra P, Malloquì-Bagué N, Frank C, Porges S. 2017. Psychiatric and psychological aspects in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:237-245.

Castori M. Ehlers-Danlos Syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular and systemic manifestations. ISRN Dermatology Vol 2012. Article ID 751768, 22 pp. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Voermans NC. Neurological manifestations of Ehlers-Danlos Syndrome(s): A review. Iran J Neurol 2014; 13(2):190-208.

Castori M, Tinkle B, Levy H Grahame R, Malfait F, Hakim A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin Med Genet 175C:148-157.

Celletti C, Camerota F, Castori M, Censi F, Gioffrè L, Calcagnini G, Strano S. Orthostatic intolerance and postural orthostatic tachycardia syndrome in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type: neurovegetative dysregulation or autonomic failure? 2017. Biomed research international. https://www.hindawi.com/journals/bmri/2017/9161865/. Accessed May 9, 2017.

Chopra P, Tinkle B, Hamonet C, Gompel A, Bulbena A, Francomano C. 2017. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:212-219.

Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. 2017. Gastrointestinal involvement in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:181-187.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Chronic fatigue in Ehlers-Danlos syndrome–hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:175–180.

Hakim A, De Wandele, I, O’Callaghan C, Pocinki A, Rowe P. 2017. Cardiovascular autonomic dysfunction in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:168-174.

Hamonet, C. Maladie ou syndrome d’Ehlers-Danlos: une entité clinique, d’origine génétique, malconnue, dont la rareté doit être remise en question. http://claude.hamonet.free.fr/fr/art_sed.htm.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org.

Henderson Sr. FC, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano CA, Ireton C, Klinge P, Koby M, Long D, Patel S, Singman EL, Voermans NC. 2017. Neurological and spinal manifestations of the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:195-211.

Lyons J, Yu X et al. Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number. Nature Genetics 48(12) Dec. 2016:1564-71. http://www.nature.com/articles/ng.3696.epdf?referrer_access_token=kkD-p2pE8cDDL5CD1Ld3HtRgN0jAjWel9jnR3ZoTv0OLzluKQm19ggXVIEhkOhCoL5WeqBE-2NbzNX250zrSY6saf84ClYXe5QCd6Ml8cJXVyO3IwXe2Fg4xQ2imE5j1rUq84b2v8A1zoVGfzqLaTQJ6z9dgZGnPiDeryqKtlDpJVhh0NIkqcozh-yfwtnAdAN6giFaq71aut6Qsm1ZpgBrmjA3KjU2o7jzSbKd1fITd17-KdARtzZXFDf1hWK-m_s7nJK205uewy3iCUhXEv-4EuCSglFcyFlC2qRO52P3zOWLHspxFbUdRoxJ54gYUnzdZRBr6uWpabZI8upyTKVnsbjROAiBKUZI-smYd7Cs%3D&tracking_referrer=solvecfs.org. Accessed Dec. 28th, 2016.

Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, Fournel-Gigleux S, Frank M, Ghali N, Giunta C, Grahame R, Hakim A, Jeunemaitre X, Johnson D, Juul-Kristensen B,Kapferer-Seebacher I, Kazkaz H, Kosho T, Lavallee ME, Levi H, Mendoza-Londono R, Pepin R, Pope FM, Reinstein E, Robert L, Rohrbach M, Sanders L, Sobey GJ, Van Damme T, Vandersteen A, van Mourik C, Voermans M, Wheeldon N, Zschocke J, Tinkle B. 2017. The 2017 international classification of the Ehlers-Danlos Syndromes. Am J Med Genet part C Semin Med Genet 175C:8-26.

Seneviratne SI, Maitland A, Afrin L.2017. Mast cell disorders in Ehlers-Danlos syndrome. Am J Med Genet Part C Semin Med Genet 175C:226–236.