Home

In Memory: Shianne Lombard-Treman, March 28, 2018

2 Comments

 

Shianne was a Cushing’s Survivor who had just published a book, Be Your Own Doctor

After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone.

With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances.

Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

 

 

Shianne Lombard Treman took her life on Wednesday, March 28th after a long struggle with depression brought on by the removal of her adrenal glands to the advancement of Cushing’s Syndrome. 

Shianne is survived by; her husband Timothy Treman, fur babies Molly & Charlie of Baltimore, her mother Geraldine Lombard, sister Danielle Huston, Husband John Huston and their 6 children, Caleb, Alaina, Juliana, Jeremy, Ashley, Aaron of Tawney Town, Brother Michael his wife Sue and brother Enzo and partner David of San Francisco and New Orleans. 

Shianne was born on May 3, 1977. She graduated from Towson University with a degree in Kinesiology. She used this degree to become a personal trainer. She loved helping people get healthy and ended up training two of the “Biggest Losers” on the reality TV show. This led to her being on Oprah as well as Dr. Phil to talk about fitness and health. 

She started her own business as a trainer in San Francisco for 5 years. It was in San Francisco that she met her dashing husband, Tim Treman. They were married in Bethany Beach Delaware in May of 2013 and moved to Baltimore in June of 2013 joining the O’Donnell Square neighborhood.

Among her accomplishments are a Black Belt in Taekwondo, multiple marathons, Tri Athlons and her work with charities.
Shianne changed lives. So many people have come forward to say that she changed their life by teaching them healthier ways to live. She inspired so many that when she was diagnosed with Cushing’s disease, a rare condition, she went into research mode to find out everything she could so she could keep doing this work of helping others. Again, she brought her knowledge of health into play by writing a book about the experience to help others with this disease. “Be Your Own Doctor” explains her battle to maintain fitness and recovery which had never been previously explored for folks dealing with Cushing’s. She was asked to speak at the Magic Johnson conference on rare diseases and in Congress about Cushings. She was also asked to speak at the National Institute of Health Conference. Unfortunately, that was never to be. Cushing’s took more than just her body, it slowly took her mind and spirit.

She was an extraordinary person who lived an extraordinary life… a bright star that burned out too soon.

Viewing will be from 4-7PM Wed April 4th at Connelly Funeral Home of Dundalk 7110 Sollers Point Rd 410 – 285 – 2900.
Reception from 7:30- for close family and friends at Sparrows Point Country Club 919 Wise Avenue, Baltimore MD 21222

Her obituary can be read here.

 

Shianne F. Lombard-Treman
May 03, 1977 – March 28, 2018

Stacy B, Pituitary/Adrenal Bio

4 Comments

 

 

Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Addison’s Disease: Periods at 4 years, Menopause at 5

Leave a comment

A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.

Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.

In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.

The 5-year-old’s adrenal glands don’t produce enough steroid hormones.

Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.

Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.

“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.

Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.

“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.

From http://www.hindustantimes.com/health/periods-at-4-years-menopause-at-5-the-little-girl-who-never-got-to-be-a-child/story-p2kkpyd31fvsBzP21LDWcO.html

~~~

 

Mary S (ladysslipper), Adrenal Bio

1 Comment

 

Originally from December 28, 2007

I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.

Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.

My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.

My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.

With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.

I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Leann, Undiagnosed Bio

Leave a comment

Originally from December 14, 2008

I’m Leann, a 40-year-old single mom of three from Pittsburgh. My son was recently diagnosed with Congenital Adrenal Hyperplasia. Because of this, it caused me to suspect possible adrenal problems with my oldest daughter (age 19) and myself. I am unsure of my daughters exact lab results (she sees an endo on 12/22), but mine seem to be indicitive that further testing is needed to rule out Cushing’s Syndrome. That’s why I am here (well, that – plus my friend told me to join).

My initial bloodwork shows high blood pressure, high BAD cholesterol, low GOOD cholesterol, and high cortisol levels. I initially went to my PCP due to extreme fatigue! I am soooooooo tired ALL THE TIME! My muscles are always sore and my bones hurt. I am prone to miagraines. I have been clinically depressed, I believe my entire life, but was diagnosed about 20 years ago. The weirdest thing (possibly unrelated) is my diagnosis of Retinitis Pigmentosa, a degenerative retinal disease characterized by loss of peripheral vision and night blindness. My mom read somewhere that loss of peripheral vision is a symptom of Cushing’s, but she can’t find the website.

I also have gained a significant amount of weight in the last few years, all in my mid-section. I look like I am either 7 months pregnant or that I drink a case a beer a day.

My PCP seems to think that I do NOT have Cushing’s because my ACTH levels are fine, but he didn’t do any special ACTH testing, only the basic bloodwork, all drawn at the same time. I argued with the nurse about it and asked that my PCP call me back (on Thursday) but he hasn’t yet.

I am just so tired of feeling like crap all the time. I am hoping to find some answers here. Thanks for reading.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Aimee, Adrenal Bio

Leave a comment

 

 

I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

April (April), undiagnosed bio (PCOS)

Leave a comment

 

Originally posted December 28, 2008

 

My name is April…I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very “very high” according to him, with regular female hormones “slightly out of whack.”

I am so condufused at have no idea where to turn. I found this board and in reading the bio’s it was like reading “my story”. I have felt like I am going crazy and no one understands…including my unsupportive husband.

My history…
2 children…premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
anemia
Underwieght (5’2…100 lbs) but have “spare tire” around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
RLS
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn’t work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that’s normal for person my size.
No sex drive.
Don’t like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on…

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn’t ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send…
April

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: