Girl, 4,with Cystic Fibrosis killed by mom,Police say- Term life

Mary Lockett was naked and high when she walked into her 4-year-old daughter’s room earlier this month, sat on top of the little girl and suffocated her, Dupo, Ill. officials said.

Emily Rose Perrin’s lips were purple and she wasn’t breathing when police arrived on April 10, The St. Louis Post-Dispatch reported. Paramedics tried to resuscitate Rose, who had suffered from cystic fibrosis, but she was pronounced dead at St. Anthony’s Medical Center.

It was the day before Emily’s 5th birthday.

Lockett, 37, was charged with first-degree murder and is being held on $1 million bail. Attorneys have requested a mental health exam for the woman, who allegedly muttered about “dark angels” when police arrived and threatened to kill herself. Family members told KTVI that Lockett was on medication for schizophrenia and bipolar disorder. However, Lockett’s 19-year-old daughter allegedly told police that Lockett took the medication sporadically.

A roommate of Lockett’s, Eric L. Kirk, told police that Lockett had purchased marijuana earlier in the day and was smoking it alone in her bedroom when Kirk briefly left the home. Kirk came back 15 minutes later, he said, to find the woman on top of her daughter. Kirk pulled Lockett off the girl and called 911, but it was too late.

“Lockett was going crazy inside the residence and saying she was going to kill herself,” according to a police report viewed by The Post-Dispatch.

A subsequent search of the residence uncovered pictures of Lockett in sexual positions – some that also included small children, who were not identified in court records.

“My little sister was an angel, a little princess,” William Perrin, Emily’s older brother, told The Post-Dispatch. “She always smiled, even though in life she was handed lemons. She had a difficult life.”



Flint mother’s devastation after second son is diagnosed with rare brain condition-Drug rehab center

Joseph and Noah Walker both suffer from Arnold-Chiari malformation, a condition where hind brain fluid leaks into the spinal canal

Brothers Joseph and Noah Walker aged 7 and 2.

When Noah Walker began waking up in the middle of the night to be sick, his mum Faye knew that history was repeating itself.

The two-year-old was displaying signs of a serious neurological condition which affects his older brother Joseph.

Sure enough, tests revealed that little Noah from Flint also had rare Arnold-Chiari malformation, where spinal fluid is blocked because the brain has grown in to the space where the spinal cord passes through at the base of the skull.

Faye described the news as a “devastating blow” which caused her to break down in tears after watching seven-year-old Joseph undergo 15 operations so far.

Speaking to the Daily Post, the 31-year-old said: “We started struggling with Noah at bedtime around five months ago.

The brothers with mum Faye
The brothers with mum Faye

“He would be fine going down but then he would wake up in the night really unsettled. At first, we put it down to teething but then it started to feel all too familiar until he started vomiting and then I knew it was too much of a coincidence.

“Noah was already under a paediatrician because he suffers with poor weight gain and so I mentioned my concerns and asked for them to be passed on to the consultant.

“I know I must’ve come across as an over-anxious mum, but I knew all the signs because we’d been here before.

“An MRI scan was arranged and I received a phone call to say my fears were confirmed. I just burst into tears at the thought of going through all that again.”

Noah is going to Liverpool’s Alder Hey Children’s Hospital next week to undergo further tests and may face the same surgery as his brother before him.

Joseph’s story featured in the Daily Post in 2012 after the family refused to accept that he just had a “virus.”

At least once a week the Ysgol Croes Atti pupil would be disturbed from his sleep complaining of head pain before vomiting once and going back to bed.

The boys suffer from Arnold-Chiari malformation, where hind brain fluid leaks into the spinal canal
The boys suffer from Arnold-Chiari malformation, where hind brain fluid leaks into the spinal canal


By the next morning he’d return to his normal self but it would only be a matter of days before the pattern would start again.

An MRI scan later revealed he had the condition and the age of three, he was sent to Alder Hey Children’s Hospital in Liverpool for a major operation to release the build up of pressure it was creating on his brain.

The thought of going through it all over again with Noah fills Faye and husband, James with dread.

Faye added: “It was hard telling Joseph that his little brother has the same condition.

“He got quite upset and he asked me if he’s given his baby brother his poorly, it’s heartbreaking.

“I am absolutely devastated that they are both going through this, I just wish I could take it all away from them.”

The family, who are anticipating stays at Alder Hey’s Ronald McDonald House are planning to fund raise after raising over £1,000 as a thank you for the charity’s hospitality during Joseph’s treatment.



Sleep Disorder Caused by Brain Malformation- Term life

A disease on the rise. A congenital defect known as the Arnold-Chiari malformation, which often is not discovered until a person is in their late 20s, causes severe pain and insomnia. Simultaneous disorders are usually present in a person with this illness. These conditions are scoliosis, degenerative disk disease, syringomyelia, cervicalgia, arachnoiditis and connective tissue disorders. The Arnold-Chiari malformation is characterized by herniation of the cerebellar tonsils beyond the skull’s foramen magnum and into the spinal canal causing compromised cerebrospinal fluid and a “myriad of symptoms,” states the Mayfield Chiari Center. Sleep disorders can be caused by this brain malformation. Intracranial surgery is the only known treatment to correct the defect in part, but the neurological damage from this progressive illness is often said to be permanent.

The greatest problem facing chiari sufferers, debatably, is timely diagnosis. People often suffer for many years due to this brain malformation before a correct diagnosis is made. Misdiagnoses or “differential diagnoses” include, but are not limited to, fibromyalgia, multiple sclerosis, chronic fatigue syndrome, intracranial hypertension and a spinal cord tumor.

Sleep apnea has been repeatedly shown to cause sleep disturbances and respiratory complications. This is a potentially fatal condition that often requires a breathing machine to maintain oxygen levels. Because of increased MRI testing in recent years, the arnold chiari malformation is increasingly being diagnosed in people with chronic pain, sleep apnea, and spinal cord cysts called syringomyelia. The incidence rate of chiari type one is somewhere between one in 1,000 and one in 5,000 people; what used to be rare is now considered uncommon. Although awareness of this condition is spreading, children and adults can die unexpectedly if treatment is postponed.

There are four other defined forms of chiari, with varying degrees of herniation and displacement, including a controversial form, known as chiari zero, where there is no herniation but other abnormalities that cause the same symptoms. The chiari zero diagnosis was established in 1998 by Dr. Jerry Oakes and his research team, and is described in great detail on the CSF Foundation’s website (an unbiased website composed of the research findings from several teams, doctors, and surgeons across the globe). Though paralysis, muscle wasting, and chronic pain are symptoms of this condition, sleep disorders caused by this brain malformation are one of the signs that can be overlooked by both patient and doctor. The specialists at the Mayfield Chiari Center say anyone diagnosed with chiari should undergo sleep studies.

Emma Brotherhood of Coalville, England is a chiari sufferer who speaks about this congenital condition in Leicestermercury. She claims the pain can be so bad at times, she feels like smashing her skull into a wall or drilling a hole into the skull to relieve pressure. She describes her head symptoms as a “migraine on steroids.” Emma states how being connected with people in support groups is comforting, but what scares her are the many deaths that are reported in these groups.

Chiari itself can be fatal from the progressive trauma to the brain stem. This is described inNeurological Science titled under “Treatment of Chiari Malformation: Who when and how.” Suicides have also been reported from within these support groups due to the severe pain association and failed treatment plans. These are expected to diminish on part due to a growing number of physicians who fully understand chiari its associated illnesses.

Another fatal outcome of this condition and sleep disorders in general, is sleepiness. The National Sleep Foundation’s poll in 2005 indicates 37 percent and 103 million people report falling asleep at the wheel, while even more report driving while feeling drowsy. In 2009, Mike M. Ahlers with CNN reported a Boston trolley crash ended in the fatality of the driver who the National Safety Board ruled, “fell into a micro-sleep just prior to the crash.” Sleep disorders in general and sleep disorders caused by chiari brain malformation, should be taken very seriously as drowsiness has shown to be a threat to many lives.

The two types of sleep apnea conditions that can affect both chiari patients and the general public are obstructive apnea and central sleep apnea. “Central sleep apnea starts in the brain, causing a problem with signals going to the muscles controlling breathing,” states the Mayo Clinic Staff. In obstructive sleep apnea there is a physical blockage or hindrance of air through the passageway. Both types have the potential to cause damaging effects on the body and even death.

Other sleep conditions have also been reported in chiari and syringomyelia patients. Syringomyelia is commonly associated with chiari patients but can also be present on its own. Syringomyelia is when a progressive cavity in the spinal canal forms, causing a range of symptoms. Sources from the chiari support group list nocturia, sleep walking, chronic nightmares, trouble falling asleep, and trouble reaching deep sleep as part of their sleep disorder. Many sufferers report having high adrenal gland activity that causes them to lose sleep days on end.

In addition to sleep disorders, cardiovascular illnesses have been reported with chiari malformation. Postural orthostatic tachycardia syndrome (POTS) is on that list. Medical journals consider POTS an autonomic dysfunction. It can cause symptoms ranging from tremor to fainting spells, reports a study from AK Agarwal, R. Garg, and P. Sarkar, from the BMJ Postgraduate Medical Journal. This is a serious condition patients complain about with signs of a resting heart rate above 90 beats per minute and rapidly fluctuating blood pressure upon standing.

Initially being found only in autopsy, chiari poses a challenge for neurosurgeons worldwide. Though not all forms of insomnia are caused by a neurological disease, some sleep disorders are caused by the chiari brain malformation. Top research is currently being done at UCLA, the University of Miami, Duke University and the Chiari Institute in New York. Furthermore, an act called the Ehrick Garion’s Act is an awareness bill created to advocate for people with chiari malformation and their families. Named after two boys who died from chiari, the act is intended to bring about much needed awareness, education and research to avoid needless deaths.

By Lindsey Alexander



Chiari Malformation Fact Sheet- Term life

The Chiari malformation is an abnormality in the lower part of the brain called the cerebellum. There are several different forms. The most common type is the Chiari I malformation (CM) which this article addresses. Less commonly, it may be known as Arnold-Chiari malformation, tonsillar herniation or tonsillar ectopia. Most cases of Chiari are congenital, meaning they are present from birth.

In normal anatomy, the cerebellar tonsils are located just above this (red) line called the foramen magnum. But in an individual with Chiari, the tonsils hang below the line (herniate) into the spinal canal. The degree to which the tonsils extend can vary tremendously.Chiari Abnormality (Pink Line)


The most common symptom of Chiari malformation is a headache, which begins at the back of the head (neck) and radiates upward. The pain is often made worse or can be brought on by coughing, sneezing or straining. These activities are known as valsalva maneuvers.

Visual problems such as nystagmus (involuntary eye movements), double or blurred vision may occur. Balance difficulties, vertigo and dizziness also may be present. Some people may have cranial nerve compression. This can result in apnea (cessation of breathing), gagging, swallowing difficulties, facial numbness or syncope (temporary loss of consciousness).

Patients may have muscle weakness, particularly in the upper extremities, coordination problems, and gait abnormalities. Imaging of the spine may reveal a fluid collection inside of the spinal cord, known as a syrinx. Some individuals may have hydrocephalus, a buildup of fluid in the ventricles of the brain.


The first step after diagnosis is to consult with a neurosurgeon who has experience treating and managing this disorder. Be aware that you may need to travel and you may wish to consult with more than one specialist.

If symptoms are mild and not progressing, your doctor may recommend conservative management. Supportive care such as headache and pain management, physical therapy or a reduction in activities can help manage symptoms.

An operation may be recommended. This is referred to as a posterior fossa decompression. The surgeon makes more room in the back of the head by removing small pieces of the skull bones. This reduces compression of the brain stem and allows the tonsils to move back into their natural position. The specific surgical techniques will vary among surgeons; no consensus yet exists on the best variation on this surgical procedure.

Is This Condition Hereditary?

Researchers investigated the genetic implications of the Chiari malformation with or without syringomyelia. A genetic prevalence has been identified in some families. Researchers continue to search for the gene(s) that are responsible for producing the Chiari malformation.

MRI scanning is recommended for family members who have signs or symptoms of the disorder.



Chiari Malformation



The woman whose brain is slipping into her SPINE: Agonising condition leaves woman feeling like her head is being slowly crushed:Chiari malformation- Term life

  • Kimberley Provan, 44, has neurological condition – Chiari malformation
  • Means the lowest part of the brain drops down into the spinal canal 
  • She needed lifesaving surgery to stop her from being paralysed
  • Struggles to walk and is now fundraising to get an electric wheelchair

    A mother has a rare disorder which feels like having her head trapped in a vice – after her brain began slipping out of her skull.

    Kimberlee Provan, 44, struggles to do everyday tasks such as walking, eating, and even talking because of her neurological condition, which is causing her brain to push on her spinal cord.

    The mother-of-two can only sit upright for four hours a day since being diagnosed with the life-limiting illness which almost paralysed her.

    The legal aid worker, from Blackpool, Lancashire, was diagnosed with Chiari malformation, which causes the brain to slip, leaving part of it below the skull, in December 2013.

    It affects just one in every 1,500 people, and causes severe neck pain, balance problems, muscle weakness, and hearing loss.

    ‘It’s like having your head in a vice and it’s being crushed.

    ‘It goes through your neck and head and behind your eyes,’ she said.

    ‘It first started about five or six years ago. It was intermittent to start with and then it was constant, every day.

    ‘Eventually I asked for an MRI scan because I just couldn’t bare with the pain any longer.’

    While her doctors had initially believed the pain was a side effect of a hip operation, the scan revealed something far more sinister.

    It showed the lower half of her brain was slowly sinking into her spine.

    She then found herself being rushed into major surgery at Salford Royal Hospital in Greater Manchester a month later with ‘the worst pain ever’.

    ‘They cut into the back of the head and removed a piece of my skull and vertebrae to make more room for the spinal fluid to flow.

    ‘I was told if I hadn’t had the surgery I would have been paralysed within the next few weeks.

    ‘I was absolutely terrified that I wasn’t going to wake up, and if I did wake up, that I wouldn’t be able to move.’

    Once a successful legal aid, Ms Provan was forced to give up her job after becoming too weak to leave home.

    She was also forced to drop out of her business degree course.

    ‘I have pins and needles in both arms and legs all the time, it never stops, and I can’t lift anything heavier than a cup of tea.

    ‘I can only walk a few metres with a stick – and all other times I need a wheelchair.

    ‘Because I can walk a few steps I don’t qualify for a power chair with the NHS, but because I have no strength I can’t push myself in my wheelchair and so I can’t go out on my own any more.

    ‘I get up every morning and I try to hard to have a shower but it takes so long. The things I used to take for granted have become my whole day.’

    I was absolutely terrified that I wasn’t going to wake up, and if I did wake up, that I wouldn’t be able to move
    Kimberlee Provan, 44

    Ms Provan said her sudden loss of independence had left her feeling like a burden to her two children Alexander, 19, and Olivia, 18.

    She said they have been ‘amazing’ with the youngest now her carer but that she was worried it was stopping them from being able to enjoy themselves.

    ‘At their age they should be having the time of their lives. They should be off enjoying themselves, not staying at home helping me in and out of the shower and making dinner.’

    Her family and friends have come together to raise money to buy an electric wheelchair and reclining bed to give her a much-desired taste of freedom.


    A Chiari malformation (sometimes called an Arnold Chiari) means that the lower parts of the brain have been pushed downwards towards the spinal cord, so they are below the entrance to the skull.

    Most people will have a type 1 Chiari malformation, which is the least serious form of the disease.

    This is where the lowest part of the back of the brain (the cerebellar tonsils) drops down into the top of the spinal canal.

    Usually, the lower parts of the brain are contained in a space within the skull, above the level of the foramen magnum (opening at the base of the skull).

    In people with a type 1 Chiari malformation, these brain parts are pushed downwards, because they are too big for the skull.

    When parts of the brain are pushed out of the skull towards the spinal cord, this can cause pressure at the base of the brain.

    It can also block the flow of cerebrospinal fluid (CSF) to and from the brain.

    CSF is a clear fluid that surrounds and protects the brain and spine, and also carries nutrients to the brain and removes waste.

    Many people with a type 1 Chiari malformation will not have any symptoms.

    When symptoms do develop, they may include headaches, dizziness, neck pain, numbness, blurred vision, swallowing problems insomnia, depression, feeling sick and vomiting.



How Ehlers Danlos Syndrome Can Affect Vision- Advanced mold remediation

This is a Guest Post by Gheri Perkins who is part-time writer, full-time mother, and sometimes advocate for those with disabilities. Originally from London, Gheri currently lives in Arizona.   To find out more about how Guest Posts work on my blog, click here

I suffer from dry eyes and am incredibly sensitive to changes in my prescription.  Good sunglasses are an essential part of my kit.  Gheri has used many medical terms in this post – if you suspect that EDS may be affecting your sight, please, go and talk to your optician!

Gheri writes…

Although Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that primarily affects the skin and joints, EDS can lead to other health problems and, depending on what type of the disorder you have, can cause some major long-term health complications. The many disorders that comprise EDS are related to defects in connective tissue—an important part of our bodies that holds together all of our organs—which can affect other aspects of your health.

When most people think about health complications attributed to EDS, they usually focus on problems with joints, major arteries, the skin, and the spine. However, EDS can also lead to eye damage and mild to severe visual impairments as the eyeball is structurally fragile and easily at risk of rupturing, which is an effect of EDS. Some people with EDS, particularly those with the kyphoscoliosis type, may experience nearsightedness, glaucoma, discoloration of the whites of the eyes, and retinal detachment. While there is no specific cure for Ehlers-Danlos syndrome, those who are suffering from EDS-related health issues must be evaluated, treated, and cared for properly as soon as they are diagnosed with EDS. From physical therapy and medications aimed at strengthening joints to ocular remedies, there are ways to treat certain EDS health complications.

While it’s highly recommended that anyone with EDS undergo frequent ocular testing, those suffering from painful or uncomfortable eye problems should get specific eye testing. While ocular issues such as nearsightedness can be handled with corrective contact lenses from Acuvue, other more serious eye problems, like constant dry eyes or corneal dystrophies, may be less easy to remedy. As a result, it’s best to go through every exam that your eye doctor suggests. It’s recommended that those with EDS should receive dilated fundus exam, ocular topography to rule out early keratoconus, Retinal Thickness Analyzer (RTA), and orbscan and/or pachymetry to check corneal thickness. Even if you’re only experiencing minor eye complications, you’ll still need visual enhancements as EDS patients are not good candidates for LASIK. EDS patients who don’t have ocular problems should still visit an eye care specialist for regular exams and remember to protect your vision with items like reading glasses when necessary or sunglasses from Topshop.

Being diagnosed with Ehlers-Danlos syndrome is not the end of the world. With suitable treatment, a multidisciplinary approach with ophthalmologists, orthopedists, pediatricians and medical geneticists, you can maintain your eye health and deal with any urgent conditions such as eyeball and vascular ruptures, and joint dislocations promptly. Make sure you see ophthalmologists and other physicians that specialize in treating EDS and be vigilant about your eye care, playing close attention to any changes in your eye sight, pain, or irritation. If you experience things like seeing blotches or spots, seek immediate attention from an eye care professional. Remember: knowing and understanding your disease will reduce your risk of serious, long-term health issues and help you manage any complications as soon as they arise.



Social Security Disability Benefits for Arnold-Chiari Malformation- Term life

Although a diagnosis of CM alone will not automatically qualify you for disability, you could win your claim if your symptoms are severely limiting.

A chiari malformation (CM) is a defect in the structure of the brain. Because of the abnormal structure of the skull, the cerebellum and brain stem are compressed, which results in a decreased flow of the fluid that protects the spine and the brain. Symptoms include dizziness, muscle weakness, numbness, vision problems, headaches, and difficulty with balance and coordination.

Types of Chiari Malformations

CM is divided in to four categories: Types I, II, III, and IV. Type IV CM is the most serious. Type II CM is used to be referred to as Arnold-Chiari malformation (after the researchers who first described the condition).

Medication may lessen the symptoms of CM, but the only way to correct the physical structure of the brain is through surgery.

Can I Get Disability for My Chiari Malformations?

Although a diagnosis of CM alone will not automatically qualify you for disability, you could win your claim if your symptoms are severely limiting. At the initial stage of the disability determination, the Social Security Administration (SSA) must determine whether your CM symptoms prevent you from performing your old job. If the SSA decides you can still do your past work, your claim will be denied; however, if the SSA feels you can no longer perform your past work, it will next determine whether there are any other jobs you can do (or learn to do).

At this point, the SSA will prepare a “residual functional capacity” assessment (RFC) that details your ability to perform certain job related tasks in light of your symptoms. An RFC is created based on the medical records you have provided to the SSA, and any examinations performed by an SSA doctor (called consultative examinations.)

For example, more severe forms of CM can result in significant impairments to a person’s balance and coordination. This deficit would eliminate any positions that required the use of heavy machinery or dangerous equipment such as construction work. CM can also affect the use of a person’s hands and fingers to the extent that fine motor skills are impaired. Fine motor skills are necessary for activities like typing, filing papers, or assembling, examining, and sorting objects on an assembly line, so the inability to perform these tasks would eliminate most secretarial and factory positions. CM may also cause significant numbness and tingling in the hands that limit the ability to lift, carry, push, or pull even light objects. This limitation alone could preclude most work.

CM sufferers may also experience difficulty with vision and speech, making it difficult to perform even day-to-day tasks or jobs that require good vision or hearing, depending on the severity of the vision or hearing loss.

You should also ask your treating physician to fill out an RFC form for you. Although the SSA will accept RFCs from any doctor, it gives more weight to reports that are prepared by a physician who specializes in the diagnosis and treatment of CM. You must also include objective medical evidence like CT scans, MRIs, and your doctor’s reports to support your doctor’s opinion.

Standard Disability Requirements

Before the SSA will assess your claim, you must meet the basic requirements for disability: you may not earn more than $1,130 a month from work, and your CM must prevent you from working for at least a year (or be expected to do so).

In addition, to qualify for SSDI, you must have a significant work history with employers that paid taxes to the SSA. For more information, see our section on SSDI eligibility.

SSI is available to people who don’t have a qualifying work history and who meet the SSA’s limit on income and assets. For more information, see our section on SSI eligibility.


Food Allergy Common in Joint Disorder- Term life

Children with the inherited disorder known as Ehlers Danlos type 3 syndrome may be at high risk for severe food allergy, British researchers reported here.

Among a cohort of 19 children with this syndrome, which is characterized by joint hypermobility and cardiovascular involvement, all had gastrointestinal symptoms found to be allergic in origin, Rebecca M. Cutts, MBBS, of Great Ormond Street Children’s Hospital in London, and colleagues reported at the annual meeting of the American Academy of Allergy, Asthma, and Immunology.

Ehlers Danlos syndrome is a group of connective tissue disorders caused by mutations in genes that regulate collagen deposition, with type 3 being the most common.

Type 3 results from mutations in at least one of two genes, and can be inherited either in an autosomal dominant or recessive manner.

Along with joint laxity, the condition often manifests skin elasticity, bruising, inadequate wound healing, and, in adults, commonly causes abdominal symptoms including pain and reflux.

Little is known about the specific gastrointestinal manifestations in young children, however, so Cutts and colleagues conducted a retrospective study at their institution, where members of the gastroenterology department have special expertise in food allergy.

The children, 11 of whom were boys, averaged slightly over 8 years-old and had confirmed Ehlers Danlos syndrome as measured clinically on the Beighton hypermobility scoring system.

Food elimination testing found that 74% were allergic to milk, egg, wheat, and soy, with small numbers also becoming symptomatic on exposure to dairy, nuts, gluten, and bananas.

Elimination of the offending foods from the diet was insufficient for symptom control, however, Cutts said in a poster session.

“This is a population that is extremely difficult to manage,” she said.

Artificial nutrition was needed for 13 of the children either via gastrostomy or parenterally.

Symptoms included abdominal pain (90%) and constipation (90%), and the most common food allergic diagnoses were eosinophilic colitis and allergic dysmotility.

Multiple medications were needed, including antihistamines and immunosuppressants in 100% and proton pump inhibitors in two-thirds.

“Severity of this syndrome can range from mild to life-threatening,” the researcher explained.

In this cohort, urologic complications were present in 28% and cardiovascular comorbidities in 39%.

The children needed care from multiple healthcare sources, including physiotherapists and dietitians along with gastroenterologists, cardiologists, and urologists.

“We don’t know why this genetic disorder is associated with food allergies, or even if there is causality involved,” Cutts told MedPage Today.

Further prospective studies are warranted to more fully explore these associations, she said.

“This is brand new to us — it’s a work in progress,” she said.



Getting Disability Benefits for Ehlers-Danlos Syndrome- Drug rehab center

If you have vascular or regular EDS with severe symptoms that prevent you from working, you may be able to get disability.

Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in your body, which serve to provide strength and elasticity to your body structure. Ehlers-Danlos can affect your skin, joints, and blood vessel walls; the syndrome is characterized by extremely flexible joints and very stretchy, fragile skin. Vascular Ehlers-Danlos syndrome is a severe form of the syndrome and affects the blood vessels in the body.

If you have EDS and are unable to work because of severe symptoms from it, you may be eligible for disability benefits, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Symptoms of Ehlers-Danlos Syndrome

Those with Ehlers-Danlos syndrome generally suffer symptoms associated with their joints, due to increased flexibility. These symptoms can include:

  • joint dislocation
  • joint pain, and
  • double- jointedness.

Skin symptoms are also common, due to the increased stretchiness of the skin, and can include:

  • easily bruised or damaged skinned
  • poor wound healing, and
  • increased scarring.

Other symptoms caused by EDS due to the connective tissue impairments include:

  • back pain
  • flat feet
  • vision problems, and
  • fatty growths, generally around the knees or elbows.

Long-term effects of EDS can include:

  • chronic joint pain
  • early onset arthritis
  • failure of surgical wounds to heal properly
  • increased skin infections due to improper healing
  • premature rupture of membranes during pregnancy, and
  • rupturing of the eyeball.

Symptoms of Vascular Ehlers-Danlos

Vascular EDS has separate symptoms and long term-effects. Those with vascular EDS have distinct facial features, including thin noses, thin upper lips, small earlobes, and prominent eyes. Their skin is also noticeably thin; blood vessels will be very noticeable on pale people who suffer from vascular EDS. This type of EDS can weaken arteries throughout the body, especially the aorta (which is the largest artery in the heart) and arteries in the kidneys and spleen. The walls of hollow organs, such as the uterus and intestines, can also be weakened.

The long-term effects of vascular EDS can be extremely severe and can lead to sudden death from blood loss in extreme cases. Some of possible complications include:

  • rupturing of a major artery, such as the aorta
  • rupturing of arteries in the organs, and
  • rupturing of the intestines or uterus.

Qualifying for Disability Benefits for Ehlers-Danlos

There are two ways that individuals can qualify for disability benefits: meeting a disability listing or proving you are unable to work.

Meeting a Disability Listing

To meet a listing, you must show that you have an impairment listed in the Social Security “Blue Book” and that you meet all of the requirements noted in that listing.

For those with EDS, there is not a specific listing. Rather, you can meet a listing for an impairment you have due to the syndrome. Below are some of the possible listings that may be meet by EDS sufferers.

  • Listing 1.02 – Major dysfunction of a joint (due to any cause)
  • Listing 2.02 / 2.04 – Vision loss
  • Listing 4.10 – Aneurysm of the aorta
  • Listing 5.02 – Gastrointestinal bleeding requiring a blood transfusion, and
  • Listing 8.04 – Chronic infections of the skin.

Please note that while the listings for arthritic and connective tissue disease under Immune System (Listing 14.00) appear to be applicable to EDS, Social Security has clarified that they do not apply to EDS because EDS is a genetic disorder, not an immune system disorder.

Unable to Work

If your symptoms don’t fit into any of the above listings, you may be able to get disability benefits if your symptoms are so severe that they prevent you from being able to do most work activities. To receive disability benefits based on an inability to work, Social Security will look at your physical, mental, and sensory limitations. Those who have EDS often suffer from both physical and sensory impairments due to the syndrome.

Physical Abilities

Physical abilities include exertional activities, such as moving or lifting items and walking or standing for periods of time. Non-exertional physical activities include the ability to sit for periods of time or to complete office work such as typing or filing and will also be considered when determining physical abilities.

For those with EDS, joint problems can affect both gross motor skills (such as walking and using your arms) and fine motor skills (such as typing or doing other work with your hands), depending on what joints are affected. Chronic pain in the joints could also affect their ability to do physical work.

Sensory Abilities

Sensory abilities include your ability to function within various work environments and to adapt to situations. For example, vision loss can affect your ability to adapt to new environments, would limit the type of work that you could perform, and can limit the locations where you can work. Additionally, if open wounds are present, the environment in which you are able to work may be limited.

Social Security’s Decision

Social Security will develop a residual functional capacity (RFC) report on you that includes your physical and sensory limitations and will compare it to the requirements of your past job as well as other work to see if there is any work within your limitations. Social Security look at these factors plus your age, education level, and work history in determining if you are able to work. For more information on this analysis, see our section on how Social Security decides if you are unable to work.