Wednesday, October 22, 2014

Safety of DR-HC for adrenal insufficiency

Conventional treatment of adrenal insufficiency involves cortisol replacement therapy with twice- or thrice-daily oral hydrocortisone. Recently dual-release hydrocortisone (DR-HC) administered once daily to provide high levels of cortisol during the morning, followed by a gradual decrease throughout the day is being used. This results in considerably lower cortisol exposure during the afternoon and evening compared with immediate-release thrice-daily hydrocortisone, thereby mimicking normal cortisol secretion more closely than conventional therapy.


Nilsson et al. conducted a study to evaluate the long-term safety of DR-HC and whether the difference in the incidence of adverse events persisted over time and if it was related to different levels of exposure to cortisol. They conducted a randomised, open-label, crossover trial of DR-HC or thrice-daily hydrocortisone for 3 months each (stage 1) followed by two consecutive, prospective, open-label studies of DR-HC for 6 months (stage 2) and 18 months (stage 3) at five university clinics in Sweden. The results of the study of the newly developed DR-HC showed that long-term maintenance treatment and rescue therapy was well tolerated up to 27 months of continuous treatment.


Read full article titled ‘Prospective evaluation of long-term safety of dual-release hydrocortisone replacement administered once daily in patients with adrenal insufficiency’ by Nilsson et al., European Journal of Endocrinology 171 pp 369 – 377, DOI: 10.1530/EJE-14-0327




Cushing Syndrome in Children: Growth after Surgical Cure

Cushing syndrome (CS) occurs only rarely in children, but when it does, it causes weight gain and stunting. In young children, adrenal tumors are usually the cause while in adolescents, pituitary tumors are more likely.


The September 2014 issue of Endocrine-Related Cancer examines growth patterns in 19 pediatric patients with ACTH-dependent CS (CD) and 18 patients with a form of ACTH-independent CS, micronodular adrenal hyperplasia (MAH). The researchers gathered data at the time of surgery and also followed up one year later.


Patients in the CD and the MAH groups had similar demographic characteristics, baseline heights and BMI scores before surgery. All patients experienced significant improvements in height and BMI after surgery. Patients with MAH, however, fared significantly better than those with CD and had better post-operative growth.


The researchers propose several reasons:



  • When ACTH-secreting pituitary adenoma requires extensive surgical exploration, remaining pituitary cells often lose some of their function.

  • CD patients tend to be older and have consistent and increased glucocorticoid exposure; they develop vertebral fractures more often leading to compromised skeletal and overall growth potential. MAH patients often have cyclical CS, with intermittent hypercortisolism and an overall milder CS.

  • CD patients often need a longer-than-expected course of therapy with steroids after surgery, which alters metabolism and growth.

  • CD patients have been shown to have advance bone age because of ACTH-induced metabolic changes.


The authors indicate that CS patients are often considered for growth hormone therapy once the underlying problem is corrected. They remind clinicians that MAH patients are less likely to need growth hormone. They recommend close monitoring for CD patients, and early intervention with growth hormone if growth does not meet expectation. -


See more at: http://ift.tt/1thzAJB




Webinar: Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Don’t miss this great opportunity.

Join us tomorrow for a free webinar!


Date: October 23, 2014

Time: 12:00 – 1:00 PM Pacific Daylight Time



Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Presented by: Saad Sakkal, MD, FACP, FACE, FACPE

Director, Metabolic Care Center, Mason, Ohio


Traumatic brain Injury has been recently of great attraction to researchers, retired football players, and the public. But years before it is documented clinically the Hypothalamic pituitary Dysfunction symptoms appear at much earlier age and need more vigorous attention.


We present in this webinar the early symptoms and recognition of the syndrome from clinical perspective. Describe the Hypothalamic Dysfunction in its widest picture, its relation to Fibromyalgia/Chronic fatigue, and its present therapy available .


If you are unable to attend the live webinar, we will have it available on our website starting Monday. I will post a link when it is available.


http://bit.ly/1qvUcZO





Monday, October 13, 2014

Monday, July 21, 2014

Cushing’s Help is 14 Today!

Who’d have believed it?  Today, July 21, 2014 is our 14th birthday!
It’s unbelievable but the idea for Cushing’s Help and Support arrived 14 years ago last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surgewondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m going to make some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
5d4c9-woohoo-scaled800

Monday, June 9, 2014

Interview with Stacy, Mom to Possible Cushing's Patient

Stacy writes in her bio
MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.
She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

McKenna's mom will be interviewed June 11 at 6:00 pm eastern in BlogTalkRadio.  Archives will be available later in the Cushing's Podcast.

Tuesday, May 6, 2014

Interview May 7 with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.


In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.


In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.


I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.


I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.


Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.


I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.


Kathy will be interviewed May 7, 2014 in BlogTalkRadio


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Friday, May 2, 2014

Cushing’s Awareness Challenge 17

robin-causes


Another of Robin’s wonderful images.


A similar image from the CushieWiki


cushings-causes


No wonder Cushing’s is so hard to diagnose!


maryo colorful zebra




Wednesday, April 30, 2014

Interview May 7 with Kathy C, Pituitary Patient

My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.

In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.

In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.

I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.

I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.

I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.
Kathy will be interviewed May 7, 2014 in BlogTalkRadio

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Tuesday, April 8, 2014

Cushing's Awareness Day 2014

It’s Here!

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted.

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.


Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

robin-harvey


MaryO

Friday, April 4, 2014

What would Harvey Cushing say about Cushing’s disease today?

harvey-book

(BPT) - More than 80 years ago renowned neurosurgeon, Dr. Harvey Cushing, discovered a tumor on the pituitary gland as the cause of a serious, hormone disorder that leads to dramatic physical changes in the body in addition to life-threatening health concerns. The discovery was so profound it came to be known as Cushing’s disease. While much has been learned about Cushing’s disease since the 1930s, awareness of this rare pituitary condition is still low and people often struggle for years before finding the right diagnosis.

Read on to meet the man behind the discovery and get his perspective on the present state of Cushing’s disease.

What would Harvey Cushing say about the time it takes for people with Cushing’s disease to receive an accurate diagnosis?

Cushing’s disease still takes too long to diagnose!

Despite advances in modern technology, the time to diagnosis for a person with Cushing’s disease is on average six years. This is partly due to the fact that symptoms, which may include facial rounding, thin skin and easy bruising, excess body and facial hair and central obesity, can be easily mistaken for other conditions. Further awareness of the disease is needed as early diagnosis has the potential to lead to a more favorable outcome for people with the condition.

* What would Harvey Cushing say about the advances made in how the disease is diagnosed?

Significant progress has been made as several options are now available for physicians to use in diagnosing Cushing’s disease.

In addition to routine blood work and urine testing, health care professionals are now also able to test for biochemical markers - molecules that are found in certain parts of the body including blood and urine and can help to identify the presence of a disease or condition.

* What would Harvey Cushing say about disease management for those with Cushing’s disease today?

Patients now have choices but more research is still needed.

There are a variety of disease management options for those living with Cushing’s disease today. The first line and most common management approach for Cushing’s disease is the surgical removal of the tumor. However, there are other management options, such as medication and radiation that may be considered for patients when surgery is not appropriate or effective.

* What would Harvey Cushing say about the importance of ongoing monitoring in patients with Cushing’s disease?

Routine check-ups and ongoing monitoring are key to successfully managing Cushing’s disease.
The same tests used in diagnosing Cushing’s disease, along with imaging tests and clinical suspicion, are used to assess patients’ hormone levels and monitor for signs and symptoms of a relapse. Unfortunately, more than a third of patients experience a relapse in the condition so even patients who have been surgically treated require careful long-term follow up.

* What would Harvey Cushing say about Cushing’s disease patient care?

Cushing’s disease is complex and the best approach for patients is a multidisciplinary team of health care professionals working together guiding patient care.

Whereas years ago patients may have only worked with a neurosurgeon, today patients are typically treated by a variety of health care professionals including endocrinologists, neurologists, radiologists, mental health professionals and nurses. We are much more aware of the psychosocial impact of Cushing’s disease and patients now have access to mental health professionals, literature, patient advocacy groups and support groups to help them manage the emotional aspects of the disease.

Learn More
Novartis is committed to helping transform the care of rare pituitary conditions and bringing meaningful solutions to people living with Cushing’s disease. Recognizing the need for increased awareness, Novartis developed the “What Would Harvey Cushing Say?” educational initiative that provides hypothetical responses from Dr. Cushing about various aspects of Cushing’s disease management based on the Endocrine Society’s Clinical Guidelines.

For more information about Cushing’s disease, visit www.CushingsDisease.com or watch educational Cushing’s disease videos on the Novartis YouTube channel at www.youtube.com/Novartis.

Wednesday, February 5, 2014

Dr Friedman: Meeting on Thyroid and Hormonal Problems

friedman


Dr. Theodore Friedman will host a free meeting on thyroid and hormonal problems on Sunday February 16 from 7-8 PM PST at Anshe Emes synagogue-1490 S. Robertson Blvd., Los Angeles, CA 90035.


The meeting will be videoconferenced to those who cannot make it in person.


To sign up for the videoconference, email mail@goodhormonehealth.com by February 14.




Tuesday, December 31, 2013

Cushing’s Awareness Patient Day

Saturday, February 1st, 2014

San Francisco, California

Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.
Cushing’s Patient Advocates – Corcept Therapeutics

Agenda and details to follow

The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body.

The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.

Cushing’s Awareness Patient Day

Saturday, February 1st, 2014


San Francisco, California


Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.


Cushing’s Patient Advocates – Corcept Therapeutics


Agenda and details to follow


The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body.


The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.




Wednesday, December 4, 2013

Tonight! Interview with Miriam K (Meeks089), Pituitary Success Story

Miriam writes in her bio:
"I suffered for eight long years with Cushings disease . I had surgery on August 1 , 2012 , I look like a different person , and act like a different person. I would love to share my journy . One that was an emotional roller coaster .
It was a long hellish journey .However I would not trade it for anything else in the world.
Although I suffered immensly, Cushings has made me who I am today. I have become strong from this disease. Although I suffered many symptoms, the emotional ones were by far the worst.
I would love to be interveiwed because I vowed when I was ill to help people when I got better.
I want to give people hope ."
MaryONote:  Miriam will be interviewed on BlogTalkRadio podcasts December 4, 2013 at 6:00PM Eastern.
If you want to ask Miriam a question, please use the call-in number: (646) 200-0162
Archives will be available at Cushings-Help on BlogTalkRadio a few hours after the conclusion of this interview.

Thursday, November 28, 2013

Wednesday, November 20, 2013

Interview with Miriam K (Meeks089), Pituitary Success Story

Miriam writes in her bio:
"I suffered for eight long years with Cushings disease . I had surgery on August 1 , 2012 , I look like a different person , and act like a different person. I would love to share my journy . One that was an emotional roller coaster .
It was a long hellish journey .However I would not trade it for anything else in the world.
Although I suffered immensly, Cushings has made me who I am today. I have become strong from this disease. Although I suffered many symptoms, the emotional ones were by far the worst.
I would love to be interveiwed because I vowed when I was ill to help people when I got better.
I want to give people hope ."
MaryONote:  Miriam will be interviewed on BlogTalkRadio podcasts December 4, 2013.

Friday, November 8, 2013

Rare Disease Week

The House & Senate Congressional Calendars came out this week!


Congress is in session during Rare Disease Week – SaveTheDate!


Feb. 25th – Feb. 28th, 2013


4 Days of Rare Disease Events in Washington DC!


More info coming soon.




Friday, October 25, 2013

Adrenal Insufficiency Video


A video about Adrenal Insufficiency and the need for emergency protocols.

An injection which costs about $10 could save a life.

Please help us make sure it's available to all who need it.


http://youtu.be/yKPnNNM_dIw

Thursday, September 26, 2013

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

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.”

Thursday, September 12, 2013

Enzyme linked to obesity

Researchers find that increased levels of an enzyme in fat cells lead to dangerous levels of abdominal obesity.
Previous studies have shown that the stress hormone cortisol can lead to an accumulation of fat round the abdomen. For instance, people with Cushing’s disease – where there’s excess cortisol in the blood – have too much abdominal fat. It’s bad for health to have fat in this area – it’s linked to diabetes and heart disease. That’s why it’s healthier to be a ‘pear shape’ rather than an ‘apple shape’. The distribution of fat in your body really does matter.
Researchers in Scotland and the US have now focussed upon an enzyme that produces cortisol to see what effect it has on abdominal fat. Working on mice genetically-modified to produce the enzyme – and therefore cortisol – in fat cells, they find that even a small increase in levels produces dramatic effects. The mice, compared with normal animals, gained fat in the abdominal area even on a low fat diet. They developed diabetes, high blood pressure, and also tended to eat more. It opens up the possibility of further studies on human obesity, and also perhaps could lead to therapies that block this enzyme and so reduce fat accumulation.

Wednesday, September 11, 2013

Hormonal disorder may make weight loss more challenging

(HealthDay News) -- Losing weight is never a piece of cake, but there are some medical conditions that may make it even more difficult.

The American Academy of Family Physicians says these conditions may make weight loss more of a challenge:
  • Hormonal disorders, such as diabetes, hypothyroidism, Cushing's disease and polycystic ovary syndrome.
  • Cardiovascular problems, including heart-valve disorders and congestive heart failure.
  • Disorders affecting sleep, including obstructive sleep apnea and upper airway resistance syndrome.
  • Eating disorders, such as bulimia and carbohydrate craving syndrome.

Thursday, August 29, 2013

The Man Unable to Feel Fear

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


http://www.youtube.com/watch?v=CZaGnFTjSsc






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