Medic Alert Bracelets

Posted on February 4, 2016 by MaryO
This was posted today on Facebook from Jeannie Middlebrooks, an EMS provider.  She says “Anyone can message me with questions too!”
I have seen alot of people recently asking for advice as to what to put on their Medic Alert Bracelets, What Kind to buy, etc.
The most common things I see are that bracelets are being bought that look like “normal jewelry” because they don’t want it to stick out.
The other thing is that they are putting the IMPORTANT information on the BACK of the bracelet
Guys I have been in EMS 16 years, and recently Diagnosed SAI this past april. so I have a few things to say on this subject. You can take it for what it’s worth, but please understand this is coming from someone who lives in the heat of the moment taking care of people like us when that moment counts.. When we find an unconscious patient we have several things that we are attempting to do to save that patient, granted looking for a medic alert tag is important, but it is not more important that keeping a compromised airway open, checking vitals, getting an IV, asking family for a history, etc. Looking for a medic alert is usually done en route to the hospital if it is not blatantly obvious upon arrival.
#1 Anything that looks pictures I have posted below, I can 100% promise you, will be looked over in the heat of the moment if you are unconscious. Your family will more than likely be on edge and forget to tell us, or you will be by yourself and no one will know to tell us to look. It looks like standard jewelry.. so I’m not going to look at it.. therefore missing your life threatening emergency.. and if I am one of MILLIONS of first responders that are unfamiliar with Adrenal Insufficiency, I will NOT recognize the signs and symptoms, and you will NOT get the care you need pre-hospital.. leaving your body without the necessary cortisol for that much longer.
#2- If you place your Pertinent information on the back of your bracelet, PLEASE make sure that the medic alert symbol is on the front of the bracelet, BIG AND RED… don’t make it small and pink, or the same color as the bracelet.. yet again. we will overlook it in the moment..
#3- Necklaces are a bad idea.. They almost always get tucked into a shirt, and we almost NEVER see them. they are easily moved.
#4- Your medic alert tag should have your name. What you Suffer From, That you are Steroid Dependant. Where your Injection Kit is location (if applicable), Instructions to give the meds or you will die.. (This alerts bystanders to give you the injection as well.. I can say this because I had a bystander do it based solely on my Medic Alert tag.. she found it, drew it up, and gave it to me), and an emergency contact who can give responders information they need. If you have more than one Critical condition. List the most life threatening in order.
Please Please Please don’t take this post the wrong way. I am saying all of this coming from someone who lives in these moments every day. I know how many first responders are not familiar with the disease that can so easily kill us, and if you are willing to risk your life for the sake of a “pretty” bracelet, then I can’t stop you.. nor can anyone here.. Just know that it is a HUGE risk…

Filed under: adrenal crisis, Cushing's, General Health, pituitary, Rare Diseases | Tagged: , , , | 1 Comment »

Woman Shaves Head Before Wedding to Support Best Friend

Posted on November 24, 2015 by MaryO

(IOWA) WCMH– An Iowa woman shaved her head three months before her wedding to support her best friend who was diagnosed with Cushing’s disease.

 

Alycia Kuberski didn’t think about how her wedding photos were going to look, but instead focused on her best friend Gina Gregoire Helton.

Helton was diagnosed with Cushing’s disease in 2014. It’s a rare illness that was caused by a cancerous carcinoid tumor in her left lung. In January of 2015, doctor’s removed Helton’s left lung and found the cancer had spread to her lymph nodes.

Four months later she went through chemotherapy and radiation. The treatments caused Helton to lose her hair in clumps. She decided to take control of her body and throw a head shaving party.

Helton did not expect her best friend to shave her head right before her wedding.

gina 1
Alycia with Gina on her wedding day.

“It meant so much to me that my friend would be willing to shave her head for me, especially 3 months before her wedding. I tried to talk her out of it, but she insisted, stating ‘It’s just hair, it is nothing compared to what you have been through,’ Gina Gregoire Helton said.

Helton said this brave and selfless move helped get the word out about Cushing’s disease.

“Her shaving her head did bring awareness because people would ask and she was able to share my story and bring awareness to Cushing’s disease, which is something I am very passionate about,” Helton said.

Helton has been cancer and Cushing’s disease-free since August.

gina 2
Best friends Alicia and Gina.
gina helton
 Alicia and Gina before shaving their heads.
gina2
Bold is Beautiful! Gina’s shaving head party.

From http://nbc4i.com/2015/11/23/woman-shaves-head-before-wedding-to-support-best-friend/

Filed under: Cancer, Cushing's, Treatments | Tagged: , , , , | Leave a comment »

Growth Hormone Deficiency Global Clinical Trials

Posted on November 23, 2015 by MaryO

Growth-Hormone-Deficiency

 

“Growth Hormone Deficiency Global 2015 Clinical Trials Review, H2” provides an detailed overview of Growth Hormone Deficiency scenario.
Report includes top line data relating on Growth Hormone Deficiency Global clinical trials scenario.
This report on Growth Hormone Deficiency also includes an review of trial numbers as well as their (Growth Hormone Deficiency) average enrollment in uppermost/top countries which are conducted worldwide.
Growth Hormone Deficiency report also covers disease clinical trials by country (G7 & E7), sponsor type, region, trial status as well as end points status.
Report Growth Hormone Deficiency also Includes prominent drugs for in-progress trials (Note: based on number of ongoing trials).
Scope of Growth Hormone Deficiency Report:-

1. This report includes a snapshot of worldwide clinical trials landscape on Growth Hormone Deficiency scenario.
2. Report on Growth Hormone Deficiency also provides top level data related to the Global clinical trials by country (G7 & E7), sponsor type, region, trial status as well as end points status on Growth Hormone Deficiency scenario
3. Report reviews top companies involved in Growth Hormone Deficiency as well as provides enlists all trials (Trial title, Phase, and Status) pertaining to the company on Growth Hormone Deficiency scenario.
4. This report provides all the unaccomplished trials on Growth Hormone Deficiency scenario (Withdrawn, Terminated and Suspended) with reason for unaccomplishment on Growth Hormone Deficiency.
5. Report on Growth Hormone Deficiency provides enrollment trends for the past five years.
6. Report provides latest news for the past three months
7. Report Also Includes Top news in past 3 months on Growth Hormone Deficiency clinical trials review scenario.

Get Sample Copy of Report Here : http://www.marketresearchstore.com/report/growth-hormone-deficiency-global-clinical-trials-review-h1-27370#requestSample

From http://www.medgadget.com/2015/11/growth-hormone-deficiency-global-clinical-trials-review-2015-market-research-store-size-share-analysis.html

Filed under: Clinical trials, growth hormone, Treatments | Tagged: , | Leave a comment »

COR-003 Clinical Trial for Cushing’s Syndrome

Posted on November 19, 2015 by MaryO

CureClick_Trial_Card_CushingsBLU2

 

This trial is testing the safety and effectiveness of an investigational drug for the treatment of Cushing’s Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects.

More about the study:

The study drug (COR-003) is administered by tablets.

  • There will be 90 participants in this trial
  • There is no placebo used in the trial

If you are interested, please find the full study details and eligibility criteria listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have been diagnosed with endogenous Cushing’s Syndrome by a medical professional (not caused by the use of steroid medications)

Participants must not:

  • have been treated with radiation for Cushing’s Syndrome in the past 4 years
  • be currently using weight loss medication
  • have been diagnosed with uncontrolled hypertension, some forms of cancer, adrenal carcinoma, Hepatitis B / C, or HIV

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

Learn why I’m posting about this Clinical Trial

Filed under: adrenal, Clinical trials, Cushing's, pituitary, Treatments | Tagged: , , , , | Leave a comment »

Osilodrostat for Cushing’s

Posted on November 12, 2015 by MaryO

The study looked at a drug to treat Cushing’s disease. The article, in the journal Pituitary, is called Osilodrostat, a potent oral 11β-hydroxylase inhibitor: 22-week, prospective, Phase II study in Cushing’s disease.
Fleseriu M, Pivonello R, Young J, Hamrahian AH, Molitch ME, Shimizu C, Tanaka T, Shimatsu A, White T, Hilliard A, Tian C, Sauter N, Biller BM, Bertagna X.
Pituitary. 2015 Nov 5. [Epub ahead of print]

Abstract

PURPOSE:
In a 10-week proof-of-concept study (LINC 1), the potent oral 11β-hydroxylase inhibitor osilodrostat (LCI699) normalized urinary free cortisol (UFC) in 11/12 patients with Cushing’s disease. The current 22-week study (LINC 2; NCT01331239) further evaluated osilodrostat in patients with Cushing’s disease.

METHODS:
Phase II, open-label, prospective study of two patient cohorts. Follow-up cohort: 4/12 patients previously enrolled in LINC 1, offered re-enrollment if baseline mean UFC was above ULN. Expansion cohort: 15 newly enrolled patients with baseline UFC > 1.5 × ULN. In the follow-up cohort, patients initiated osilodrostat twice daily at the penultimate efficacious/tolerable dose in LINC 1; dose was adjusted as needed. In the expansion cohort, osilodrostat was initiated at 4 mg/day (10 mg/day if baseline UFC > 3 × ULN), with dose escalated every 2 weeks to 10, 20, 40, and 60 mg/day until UFC ≤ ULN. Main efficacy endpoint was the proportion of responders (UFC ≤ ULN or ≥50 % decrease from baseline) at weeks 10 and 22.

RESULTS:
Overall response rate was 89.5 % (n/N = 17/19) at 10 weeks and 78.9 % (n/N = 15/19) at 22 weeks; at week 22, all responding patients had UFC ≤ ULN. The most common AEs observed during osilodrostat treatment were nausea, diarrhea, asthenia, and adrenal insufficiency (n = 6 for each). New or worsening hirsutism (n = 2) and/or acne (n = 3) were reported among four female patients, all of whom had increased testosterone levels.

CONCLUSIONS:
Osilodrostat treatment reduced UFC in all patients; 78.9 % (n/N = 15/19) had normal UFC at week 22. Treatment with osilodrostat was generally well tolerated.

KEYWORDS:
11β-hydroxylase; Cortisol; Cushing’s; LCI699; Osilodrostat

Filed under: Cushing's, pituitary, Treatments | Tagged: , , , , , , , , , , , , | Leave a comment »

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