Remaining calm = Reducing illness

Posted on October 9, 2013 by MaryO

Have you ever noticed that when you are “stressed” you can feel either emotionally/physically depleted or energized?  When our body is under stress the brain responds by producing epheniphrine or adrenaline, sending signals to our adrenal glands, increasing the rate at which our heart beats while releasing oxygen to our muscles.  The long term response to this process produces cortisol (aka the stress hormone) facilitating the release of energy throughout our body.  However, when our body isn’t properly balanced these hormones can wreak havoc on our wellness possibly resulting in one of three conditions:  Cushing’s syndrome, Cushing’s disease or Addison’s disease.

adrenal-glandsThe actual Adrenal glands sit physically atop both kidneys, taking on a triangular shape and a roundish rectangular type shape.  These glands are responsible for our sex hormones and cortisol, helping us respond to stress amongst other functions.  When our body is under stress, physically and/or nutritionally, it responds one of two ways:  Produces too much or too little of the cortisol hormone.  Our Adrenal glands also contribute to regulating our blood sugar, blood pressure, salt and water.

Adrenal disorders can cause our body to make too much or not enough of these hormones, bringing about adrenal gland related syndromes and disease.  Cushing’s syndrome results from our body making too much versus Addison’s disease produces too little.

Cushing’s syndrome vs. Cushing’s disease

Glucocorticoids (naturally produced in our body or received through medicine) are groups of corticosteroids (cortisol or dexamethasone) involved in metabolizing our carbohydrate and protein.  When taken synthetically (i.e. treatment of allergies, skin problems, and respiratory problems) or over-produced naturally, the side effects can result in “Cushing’s syndrome”.

Cushing’s syndrome can occur one of two ways:  Endogenous or Exogenous.  Endogenous is caused by the body (usually through tumors).  Exogenous is caused by medication.  In both cases, the body produces too much cortisol.

Symptoms: Severe fatigue/muscle weakness, high blood sugar and high blood pressure, upper body obesity, thin arms/legs, bruising easily

Treatment:  The cure and treatment for Cushing’s disease can come through medicine, surgery, or by lowering the dosage of your current synthetic hormone treatment.  Cushing’s syndrome can be cured.

Cushing’s disease is the most common form of endogenous Cushing’s syndrome and is likely treatable.  Caused by a tumor in the pituitary gland secreting too much Adrenocorticotropic hormone (ACTH), this type of tumor does not spread and can be removed through surgery.

Nutrition:  See a nutritionist or dietician for your condition.  Mostly, avoid excess sodium.  High blood sugar (hyperglycemia) and high blood pressure can easily occur with this condition.  Bone loss density is common with this condition, so be extra aware of your calcium (800 – 1200 mg per day, based upon age) and Vitamin D intake (5mcg from age 0-50, increasing up to 10 mcg 50-71, and 15 mcg after 71).  Eating healthy, balanced and whole food (versus processed) is extremely important.

(Resource:  http://www.aboutcushings.com/understanding-cushings-disease/causes-and-differences.jsp)

Addison’s disease

Opposite from Cushing’s syndrome, Addison’s disease doesn’t make “enough” of the sex hormones and cortisol.  The result of this disease causes our immune system to attack our tissue, damaging our adrenal glands.

Symptoms:  Weight loss, muscle weakness, increasingly worse fatigue, low blood pressure and patchy or dark skin.

Treatment:  If left untreated, the condition can be fatal.  Lifetime hormone treatment is usually required. Addison disease patients should always carry medical/emergency ID on them, listing their medication, dosage and disease

Lab tests can confirm that you have Addison’s disease. If you don’t treat it, it can be fatal. You will need to take hormone pills for the rest of your life. If you have Addison’s disease, you should carry an emergency ID. It should say that you have the disease, list your medicines and say how much you need in an emergency.”

(Ref: http://www.nlm.nih.gov/medlineplus/cushingssyndrome.html, NIH: National Institute of Neurological Disorders and Stroke)                                                                                                                                                                                                                                        Learning how to balance our stress-filled lives is extremely important to our overall health.  Healthy nutrition always contributes benefits to our overall wellness.  We can overwhelm our endocrine system by simply not eating nutritionally.  Understanding that “Food is a drug” is vitally important to how we help our body naturally heal itself.  The above two conditions are the result of our body not handling the stress we are putting it through, causing our body to producing too much or too little of the sex hormones and cortisol.

Unless we first address what we can do naturally through nutrition, the medicine we consume will only do so much in helping our body heal completely.  You simply cannot continue doing the same thing over and over again, expecting the medicine to do all the work.  Some diseases are brought upon us through our environment (emotionally as well as physically) as well as our diet/nutrition.  Reviewing our entire wellness is always wisdom whenever we’re diagnosed with anything.

Certainly listen to your doctor and their advice.  But also ask your doctor to refer you to a nutritionist or clinical/registered dietician for a complete evaluation that includes a review of your nutritional diet/wellness.  Too often we reach for a pill or a procedure to “fix” our health problems, ignoring what we should be doing on our own to help our body heal.  Medical intervention is the result of providing our body with what it cannot produce on its own.  Nutrition should always be the “natural” medicine we take, as well as what we might need through prescribed medication.

Adapted from (Spelling errors corrected) http://hamptonroads.com/2013/10/remaining-calm-reducing-illness

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No High-Quality Studies for Cushing’s Drugs

Posted on October 4, 2013 by MaryO

By Salynn Boyles, Contributing Writer, MedPage Today

Reviewed by Zalman S. Agus, MD; Emeritus Professor, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse Planner

There is a paucity of clinical trial data supporting the efficacy of most drugs used to treat Cushing’s disease, researchers reported.

Just one drug — pasireotide — has been evaluated in a randomized, double-blind trial, but even it was judged by the researchers to have only a ‘moderate’ level of evidence supporting its effectiveness and safety.

The review of the literature evaluating drug treatments for Cushing’s disease, a rare pituitary disorder, is the first to employ a rigorous systematic approach with strict, predefined inclusion criteria and formal analysis of the quality of evidence using an established standard, researcher Monica Gadelha, MD, PhD, of Brazil’s Federal University of Rio de Janeiro, and colleagues wrote in the journal Clinical Endocrinology.

“This systematic review indicates that the majority of medical therapies currently used in the treatment of Cushing’s disease are supported by a low level of evidence,” the researchers wrote. “Further well-designed prospective studies of medications in Cushing’s disease would help to inform clinical practice further.”

Cushing’s disease is the most common form of endogenous Cushing’s syndrome, a hormonal disorder resulting from persistent exposure to abnormally high levels of the hormone cortisol. In the case of Cushing’s disease, the cortisol is secreted by a pituitary adenoma.

Prolonged exposure to high levels of cortisol raises the risk for diabetes mellitus, cardiovascular disease, osteoporosis and nephrolithiasis. Patients with persistent Cushing’s disease have a 3- to 5-fold higher mortality than the general population.

Surgery to remove the pituitary adenoma is the first-line treatment for Cushing’s disease in the U.S., and when the procedure is performed by an experienced surgeon, remission rates in patients with smaller tumors range from 65% to 90%. The long-term remission rate is lower, however, because many patients develop recurrent disease.

Several medical therapies are widely used to treat patients who are not candidates for surgery or who experience relapse following surgery.

Novartis Oncology’s somatostatin analog drug pasireotide (Signifor) became the only drug approved for this indication in December of last year. And the progesterone-blocking drug mifepristone, best known as the abortion pill once called RU-486, was approved in February of 2012 for the treatment of Cushing’s disease-associated hyperglycemia.

Other drugs — including metyrapone, mitotane, cabergoline, and ketoconazole — are also used off-label in the treatment of Cushing’s, and several have shown better response rates than pasireotide in small studies.

In their systematic review, Gadelha and colleagues identified 15 studies that included at least 10 adults with Cushing’s disease and reported treatment responses as the proportion of patients reaching a specified definition of response. Studies examining combinations of medications were excluded from the analysis, as were studies with indefinite diagnoses of Cushing’s disease.

For medications other than mifepristone, studies had to report the proportion of patients with normalized urinary free cortisol (UFC), midnight salivary cortisol or midnight serum cortisol.

The studies were scored according to the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) system for rating quality of evidence.

Ten of the 15 included studies reported outcomes specifically for patients with Cushing’s disease and the remaining five included patients with other forms of Cushing’s syndrome.

The researchers reported that:

  • Pasireotide was the only treatment assessed in a randomized trial, and it was judged to have a ‘moderate’ level of evidence supporting its use. Response rates from three prospective studies of the drug ranged from 17% to 29%.
  • The remaining medications were supported by a ‘low’ or ‘very low’ level of evidence.
  • The highest response rates were reported in a small retrospective studies of metyrapone (75%, one study) and mitotane (72%, one study).
  • Response rates were 25% to 50% for cabergoline (four studies) and 45% for ketoconazole (one study).
  • Among studies that included patients with other forms of Cushing’s syndrome, response rates were 53% to 88% for ketoconazole (three studies), 70% for mitotane (one study), 57% for metyrapone (one study), and 38% to 60% for mifepristone (one study).

 

But the researchers urged caution in comparing the drugs, citing the variability in the study designs and patient selection endpoints, among other limitations in the research literature.

“The wide variation in the time-frames over which response to treatment was measured makes comparison a challenge,” they wrote. “Comparison of response rates reported in the included studies is also complicated by the variation in methodology used to assess response.”

They noted that well-designed clinical trials are needed to determine which drugs or drug combinations are most effective in the treatment of Cushing’s disease patients.

“Combinations of medical therapies with different modes of action might aid in optimizing the balance of efficacy and safety,” they wrote. “Investigational medications, such as bexarotene, LC1699 and retinoic acid, may help to expand the range of future therapeutic options.”

Maria Fleseriu, MD, who was not involved in the review, agreed that more drug treatments are needed. But she added that Cushing’s patients today have many more drug options than they did just a few years ago.

Fleseriu directs the Pituitary Center at Oregon Health & Science University, where she is an associate professor of medicine and endocrinology.

In a recently published analysis, Fleseriu wrote that pituitary-targeted medical therapies should soon play a more prominent role in treating Cushing’s disease, and may become first-line treatments when surgery fails or is contraindicated.

“We now have one drug approved for Cushing’s and another approved for diabetes symptoms associated with the disease,” she told MedPage Today. “We are moving forward, but we are not where we would like to be. Combination therapy is probably where we are heading, but further studies are needed.”

Financial support for this research was provided by Novartis Pharmaceuticals.

Researcher Monica Gadelha reports receiving speaker fees and participating on advisory boards for Novartis. Gadelha and co-author Leonardo Vieira Neto were investigators in Novartis’ clinical trials of pasireotide.

 

From http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/42043

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Prince George’s woman works to raise awareness about rare disease

Posted on September 26, 2013 by MaryO

Lanham resident to speak at Patient Education Day event about Cushing’s disease

By Sophie Petit Staff Writer
stacy

Greg Dohler/The Gazette

Lanham resident Stacey L. Hardy, a survivor of Cushing’s disease, will speak about her experience with the pituitary disorder at an upcoming event at Johns Hopkins Hospital.

Stacy L. Hardy of Lanham described herself as athletic, which is why she became concerned when in 1996 she mysteriously gained 240 pounds that took five doctors 14 years to determine she had a potentially fatal disease.

Now Hardy said she wants to raise awareness among others who may unknowingly have Cushing’s disease, but are unaware of the symptoms and treatment.

It wasn’t until 2010 that Hardy, now 43, was diagnosed with the disease, a rare disorder that causes the body to release too much cortisol, the body’s stress or “fight or flight” hormone, said Gary Wand, a pituitary gland specialist at The Johns Hopkins Hospital in Baltimore.

Excess cortisol causes weight gain, especially in the stomach, extreme fatigue, muscle aches, anxiety and depression, he said.

“I didn’t even know what Cushing’s was. I was ready to just live with [the symptoms],” Hardy said, adding that by the time she was diagnosed she felt so tired she could barely move.

At 5 feet, 4 inches tall, Hardy said she reached 365 pounds during her struggle with the disease.

“We knew something for a while wasn’t right, but I never thought it would be something like that,” said Hardy’s daughter, Paij Hardy, 21, a student at Baltimore City Community College.

Just three out of every one million people are diagnosed with Cushing’s each year, said Wand, who estimates he sees 30 patients per year worldwide.

In 2011, Hardy underwent 16 hours of surgery at Sinai Hospital in Baltimore to remove four tumors from her pituitary gland, located at the base of the brain that controls the release of cortisol.

Today, she is 100 pounds lighter, with the weight still rapidly coming off, and said she is determined to serve as a lifelong support and education source for her fellow “cushies” — others with Cushing’s disease.

Hardy will speak Saturday at the Johns Hopkins Pituitary Gland Center’s fifth annual Patient Education Day, an event to raise awareness about the disease, Wand said.

Since the pituitary gland is the size of a kidney bean, Hardy underwent several brain scans before doctors, who previously suggested she might have leukemia or needed to diet and exercise more, could tell there were tumors on her gland, she said.

Hardy’s experience with delayed diagnosis and misdiagnosis is not unique, Wand said.

Cushing’s is a “subtle” disease, which is difficult to diagnose, and not everyone exhibits the same symptoms, he said.

If left untreated for more than a decade, the disease is fatal, but removing the pituitary gland tumors has proved extremely successful, Wand said.

“I’m evidence that there’s help out there,” Hardy said. “I can move. I can almost run. I can bend over and pick up a box. Oh my goodness, I can dance.”

From http://www.gazette.net/article/20130926/NEWS/130929354/1077/prince-george-x2019-s-woman-works-to-raise-awareness-about-rare&template=gazette

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NIH: An Open-Label Study of The Safety, Pharmacokinetics and Pharmacodynamics of Mifepristone in Children With Refractory Cushing’s Disease

Posted on September 13, 2013 by MaryO

This study is currently recruiting participants.

Summary

Number 13-CH-0170
Sponsoring Institute National Institute of Child Health and Human Development (NICHD)
Recruitment Detail Type: Participants currently recruited/enrolled
Gender: Male & Female
Min Age: 6
Max Age: 17
Referral Letter Required No
Population Exclusion(s) None
Special Instructions Currently Not Provided
Keywords Child;
Cushing Syndrome;
Metabolism;
Mifepristone;
Pharmacokinetic-Pharmacodynamic
Recruitment Keyword(s) None
Condition(s) Cushing’s Syndrome;
Cushing Syndrome
Investigational Drug(s) Mifepristone
Investigational Device(s) None
Intervention(s) Drug: mifepristone
Supporting Site National Institute of Child Health and Human Development

Background:

– There are currently no approved therapies for children with Cushing’s disease who are not cured by surgery alone. A drug called mifepristone has been approved to treat adults with Cushing’s syndrome and elevated blood glucose caused by Cushing’s. The drug is marketed under the name Korlym(Registered Trademark). The study drug may have a different effect on a child’s body than an adult’s, so researchers want to know how much of the drug to give children and what effect it will have. They want to learn if mifepristone improves Cushing’s disease in children as it does in adults. They also want to know about the drug’s side effects in children.

Objectives:

– To study the effect of a medication called mifepristone in children with Cushing’s disease that has not been helped by pituitary surgery.

Eligibility:

– Children ages 6 to 17 with active Cushing’s disease following pituitary surgery and who have a body weight higher than expected for their height and age.

Design:

– Participants will be screened for up to 8 weeks with a physical exam, medical history, and medical tests including blood tests and X-rays.

– Participants will take tablets of the study drug each day for 12 weeks.

– Participants will stay at the clinic for 4 nights at the beginning of the study. They will have three 1-day visits during the study. They will stay at the clinic the last 3 days of the study.

– At these visits, participants will be given several tests. In one test, a small wire is inserted under the skin of the belly and a small monitor is attached taped to the belly. In another, the participant drinks a liquid and blood samples are taken.

– Follow-up visits will occur 4 weeks and 12 weeks after the study ends.

–Back to Top–

Eligibility

INCLUSION CRITERIAPatients who are eligible for enrollment must meet the following eligibility criteria:

– Males and females 6-17 years at informed consent

– Active Cushing’s disease as demonstrated by the following:

–24 hour Urinary Free Cortisol greater than the upper limit of normal for age on two urine collections during screening and

— midnight serum cortisol > 4.4 mcg/dL (mean of two determinations on a single day at 2330 and 2400 during screening)

– Previous trans-sphenoidal surgery (TSS) for ACTH secreting pituitary tumor at least 3 months prior to screening

– Increased body weight defined by BMI Z-score of 1.5 or above

– Able to provide consent/assent

– Able to swallow study drug tablets (not crushed or split)

– Willing to use non-hormonal method of contraception in patients of reproductive potential

– Primary health care provider in home location

EXCLUSION CRITERIA:

– Hypercortisolism not due to Cushing’s disease.

– Type 1 diabetes mellitus

– HbA1c geater than or equal to 9.5% at Screening

– Body weight < 25 kg

– Use of certain medications that are CYP3A substrates with narrow therapeutic ranges, such as simvastatin, lovastatin, cyclosporine, dihydroergotamine, ergotamine, fentanyl, pimozide, quinidine, sirolimus, and tacrolimus during the 4 weeks prior to starting study drug. Use of these medications is also prohibited until 2 weeks after end of dosing.

– Use of certain medications that are strong CYP3A inhibitors such as itraconazole, nefazodone, ritonavir, nelfinavir, indinavir, atazanavir, amprenavir, fosamprenavir, boceprevir, clarithromycin, conivaptan, lopinavir, mibefradil, posaconazole, saquinavir, telaprevir, telithromycin, and voriconazole during the 2 weeks prior to starting study drug.

Use of these medications is also prohibited until 2 weeks after end of dosing. Grapefruit and grapefruit juice are prohibited during this time frame.

– Use of certain medications that are strong inducers on CYP3A such as rifampin, rifabutin, rifapentin, phenobarbital, phenytoin, carbamazepine, St. John’s wort during the 2 weeks prior to starting study drug. Use of these medications is also prohibited until 2 weeks after end of dosing.

– Use of medications used to treat hypercortisolism from the duration indicated below prior to Day 1. Use of the medications is also prohibited until after the end of study 4 week follow up visit.

–steroidogenesis inhibitors such as ketoconazole, metyrapone: 4 weeks

–cabergoline, bromocriptine, somatostatin analogs such as octreotide, lanreotide, pasireotide long acting formulations: 8 weeks (immediate release formulations: 2 weeks)

–mitotane: 8 weeks

– Use of systemic glucocorticoid medications beginning 1 month prior to screening or anticipated use of these medications except for the treatment of adrenal insufficiency. Use of glucocorticoid medications is prohibited during the study until after the end of study 4 week study visit.

– Inflammatory, rheumatological, proliferative or other disorder(s) that would be anticipated to worsen with glucocorticoid blockade (e.g. inflammatory bowel disease, rheumatoid arthritis, psoriasis, etc.).

– Uncontrolled hypo- or hyperthyroidism.

– Uncorrected hypokalemia (< 3.5 mEq/L). The screening period may be used to correct hypokalemia prior to starting study drug. Use of potassium and/or mineralocorticoid antagonists is permitted during the study.

– QTc geater than or equal to 450 msec on Screening electrocardiogram

– Unexplained vaginal bleeding in females and/or any history of endometrial pathology.

– Positive pregnancy test in females.

From http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2013-CH-0170.html

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The Man Unable to Feel Fear

Posted on August 23, 2013 by MaryO

Jordy is a British man who has been dealing with Cushing’s and many surgeries.

 

Jordy-Cernik

He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.

Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.

While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.

Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.

He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.

“I nearly did a bungee jump a few years ago, but I just couldn’t do it.

“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”

Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.

“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.

“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.

“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.

“It can be quite frustrating as well though.

“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”

However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.

Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.

But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.

“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”

Cushing’s affects around one in 50,000 people in Britain.

It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.

In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.

While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.

“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.

“I developed this big round moon face and really quite large man boobs, which was so embarrassing.

“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.

“One of the worst things was that people would stare.

“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.

“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”

But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.

“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.

“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.

“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”

Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.

He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.

“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”

He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.

During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.

And while removing a rib to access the adrenal gland in his torso, his lung was punctured.

That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.

“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”

Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.

His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.

He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.

At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.

Thanks to the surgery, his life has improved enormously since 2010.

In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.

Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.

The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.

Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.

“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.

“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”

The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.

It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.

The event is live on BBC One on Sunday 15th September between 9.30am to 13.30

For more information, visit www.greatrun.org

From  http://www.mirror.co.uk/news/real-life-stories/jordy-cernik-man-unable-fear-2208002#ixzz2cny6XeFr 

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