I’m sure that there will be changes which we will figure out together.
The “skin” that we have now won’t be supported by the upgrade but I’m sure I can make it look nice again after the upgrade.
Please be patient during this process, and while we figure out the new features.
Thanks!
Find the message boards here.
A rare disease diagnosis is something that no one can plan or prepare for and it can often lead to financial burdens, but with the right guidance in financial planning, you can overcome these budgeting obstacles. Listen in to hear professionals in finance guide you through money management and budget preparation.
If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.
Don’t forget, to access this webinar use the password: “Rare” with a capital “R”.
As an advisor with 1847Financial, Lori supports the goals of individuals and families through life insurance, fixed annuities, disability, and long-‐term care insurance. Before working in this industry, Lori as a pharmaceutical sales representative for Merck&Co., but experienced a life-‐changing event when she became the mother of a son diagnosed with Fragile X Syndrome. Lori made a significant career change to help other families navigate through the special needs planning process, and to help them secure the future they envisioned for themselves and their loved ones. Her mission is to help as many families as possible achieve their goals by ensuring all financial, legal, and government benefit resources effectively combine to work to their advantage.
Lori is involved in many efforts within the special needs community, including advocacy, participation in clinical research, co-‐leader and member of parent support groups, and a parent mentor of Parent to Parent USA. Lori is also a member of Children and Adults with Attention Deficit Disorder (CHADD), and Parent and Founder of the Special Needs Resource Network.
Lori received her Bachelor’s Degree in Biology from Bucknell University and her Master of Science degree in Ecology from Pennsylvania State University. She also obtained a Master of Science degree in Regulatory Affairs and Quality Assurance from Temple University in Philadelphia, PA.
Pat is a Certified Financial Planner (CFP) and has a passion for working with families. His knowledge and expertise allows him to develop comprehensive and holistic financial plans for his clients that provide the framework for making financial decisions that will help achieve their lifetime and legacy planning goals.
Pat is also a Chartered Special Needs Consultant (ChSNC).This designation has provided Pat with the knowledge to address the unique circumstances and requirements of planning for individuals with special needs a core focus of his practice. Pat received his Bachelor’s Degree in Finance from Albright College in Reading, PA and holds his FINRA Series 7, 66, 63 & 6 Securities Licenses. Pat began his career in the financial services industry in 2005 after a successful baseball career at Albright where he was awarded Conference Player of the Year during his senior season.
Prior to joining 1847Financial, Pat partnered with the MetLife Center for Special Needs Planning where his passion for working with the special needs community began. He is a board member of the Timothy School in Berwyn, PA which is devoted exclusively to teaching students with autism. He is involved with supporting many special needs organizations such as Ascend–the Asperger and Autism Alliance of Greater Philadelphia, Autism Cares Foundation, Down Syndrome Interest Groups, and PLAN of PA.
Tony Ferrandino founded Drew’s Hope in 2007 with his wife, Katie, when their son Drew was diagnosed with Batten disease. Drew’s Hope is a non-profit foundation which is focused on raising funds for Batten disease research. As a parent of a child with a rare disease, Tony has used his personal experience to fuel his passion for advocacy. In September of 2014, Drew passed away from late infantile Batten disease. Tony serves on the Board of Directors for the Batten Disease Support and Research Association (BDSRA) and works closely with the Scientific Advisory Board to determine appropriate research funding. He received a Portrait of Courage Award in 2015 from the National Organization for Rare Disorders (NORD) for his continued efforts to raise funds for research. Tony is a Senior Financial Advisor at Merrill Lynch with over 25 years of experience in the financial services industry and he has focused on helping families with special needs children prepare financially for life’s transitions.
Daniel Levine, Founder & Principal, Levine Media GroupDaniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.
The 9th annual Pituitary Day will take place on October 14, 2017. Patients living with pituitary disorders can hear lectures from our pituitary specialists, see movies of pituitary surgeries and hear from other patients about their experience living with pituitary disease and undergoing surgery.
Attendance is free, and patients can bring one guest.
Call 410-955-3921 or reserve your spot by email at pituitaryday@jmhi.edu
Sheryl talked about what it’s been like living with Addison’s after a BLA – for over 30 years.
Read Sheryl’s bio at https://cushingsbios.com/2017/05/21/sheryl-adrenal-patient/
Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/07/interview-with-ashleigh-marinewife05
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Gracie says: “I’ve been having symptoms of Cushing’s at least 14 yrs. I began testing with Dr. F. June, 2007. I was diagnosed in May, 2008 with cyclical Cushing’s disease. I have surgery coming up soon. I’m going to see Dr. J. next Monday, and I’ll get my surgery date that day, so I will know by the night of the program, when I am going to surgery.) Let me know if you need more info.”
Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/31/interview-with-gracie-fatnsassy
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Part 1. Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing’s. They also discussed popular doctor blogs and other topics of interest to Cushing’s Patients.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/21/tentative-interview-with-joselle
Part 2. Robin and MaryO discuss the role of blogs in helping to spread the word about Cushing’s. They also discuss popular doctor blogs and other topics of interest to Cushing’s Patients, friends and family.
Would you like to participate? Just click here and tell me a bit about yourself. Then check the box that you would like to be interviewed. We’d love to have you!
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Today is the final day of the 2017 Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…
To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year. Possibly this will continue to be a tradition. Or not. Interest seems to be dwindling down a bit 🙁
I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.
So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!
I am trying to get away from always reading, writing, breathing Cushing’s and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.
If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally. Those are listed in the right sidebar of this blog, past the Categories and before the Tags.
Meanwhile…
Katie’s short bio: Symptoms started in 2002 at age 22, or before. Jan. 2008 – 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI Jan. 2008 – DX – hypothalamic amenorrhea Mar. 2008 – DX – pituitary adenoma, hypogonadism – female Katie will be an officer in the upcoming Cushing’s Help Organization.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/24/interview-with-katie-kvb927
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People often ask me how I found out I had Cushing’s Disease. Theoretically, it was easy. In practice, it was very difficult.
In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”
I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.
After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it. It was too rare. I was rejected each time.
Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.
In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.
According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.
The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”
So, doctors typically go for the easily diagnosed, common diseases. Just because something is rare doesn’t mean that no one gets it. We shouldn’t be dismissed because we’re too hard to diagnose.
When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.
When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me. Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me. They packed me off to an endo where the process started again.
My final diagnosis was in October, 1987. Quite a long time to simply “…ask your doctor about Cushing’s”.
Looking back, I can see Cushing’s symptoms much earlier than 1983. But, that ‘s for a different post…
More from Dr. Karen Thames:
Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”
Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”
Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!
Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis
Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.
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