The Health Datapalooza? Sold Out!

What:  Plug into the Ecosystem of Health Innovation. Bring creative ideas, and connect with startups, developers, and designers. Learn how to utilize the exploding market of healthcare data innovation, and network with recognized VCs, funders, policy makers, and potential partners.

The Health Datapalooza will feature keynote addresses, a Data & Apps Expo, demonstrations of cutting-edge apps, hands-on data deep dives, and thought-provoking panel discussions. There will also be plenty of time for networking and one-on-one interaction.

Where: The Washington Convention Center, Washington, DC

When:  June 5-6, 2012

Harnessing the Power of Data to Improve Health


The Health Data Initiative is a public-private collaboration that encourages innovators, entrepreneurs, startups, data geeks, community activists and policy makers to utilize health data to develop products and applications to raise awareness of health and health system performance and spark action to improve health.
On June 9th the Department of Health and Human Services and the Institute of Medicine will hold a second health data forum that will bring together over 500 people in person to showcase how health data can create tools and applications to support more informed decision-making by consumers/patients, health care systems, and community officials.


The innovators presenting are a great example of how data and technology can be harnessed in powerful ways to help provide better care and better health.


Over 40 companies will be featured. This event will be live streamed throughout the day with a series of major announcements (challenges issued, new university programs and partnerships, and new major activity in the startup world).

Although sold out, you can get on the Health Data Initiative Forum III mailing list.

The Pain? Tick Tock and It Don't Stop.... (Entry # 9)

(Excerpt taken from previous document of my experiences)


My October period. Well, what can I say? This was the end all be all of everything I had gone through. Pain galore. I had to go to the ER on Friday.

My parents were on their way up here and I called them on their cell and told them to just meet me at the hospital. By the time I got to the hospital and parked my car and was heading to the building, Mom and Dad pulled up. I was so glad to see them. Mom got out the car and I wrapped my arms around her and just started crying. Crying in because I was glad to see them and crying due to the pain. We got checked in and sat down. Dad came in shortly and I wrapped my arms around him from where I sat and started crying again.

Before too too long, staff called me back. I sat down and they took my temperature and blood pressure. It was then time to sign the insurance paperwork. The desk for this couldn’t have been anymore than 10 steps away, but I could not get up. I knew and felt that it was going to be too painful. Mom and Dad said they would help me, but I didn’t want to. I finally did get up and screamed out in pain and started crying. I had one arm around Mom’s neck and one around Dad’s neck (my parents are in their seventies and eighties - I’m supposed to be taking care of them).

You must believe me when I say that this kind of pain is just unimaginable. I sat down and signed my name to all the papers. By this time, I had this down and didn’t have to read anything. I was in so much pain I just signed. Staff had gotten a wheelchair for me by this time to take me to a room in the back. Mom went back with me and helped me get into the gown. At some point the doctor came in asked me some questions and I was administered some medication. He said the medicine would not take away all of my pain, but make it more manageable. He didn’t lie. The medicine did not take away most of my pain, but I thought it would get better.

Why couldn’t the medicine take away all of my pain as it had in the past?  I don’t believe that he gave me enough of whatever. Anyway, he prescribed anaprox and I already had percoset. He said if need be I could take them together and you better believe I did. But I ran out of Percoset.

Saturday morning I was still in pain and got my parents up around 6 or 6:30 am and we headed back to the hospital.

Too Hot, Too Cold & Definitely Not Just Right (Entry #8)

So we left off with me telling you that Doc put me on Lupron after my surgery. Ahh yes; Lupron....


(Excerpt taken from previous document of my experiences)

While I was on the Lupron, I didn’t have any periods so I didn’t have any pain. However, I was hot flashing all over the place and suffered from severe insomnia. I was waking up almost every hour, covers on --- covers off because I was hot and then cold. I was unfocused and tired at work. It was just a crazy time. The Lupron started wearing off and I started to feel normal again, although my periods hadn’t started back yet. I was happy, but just a little concerned about why my period had not come on yet and whether that was normal.

Come September 2005, I finally had my first period since being off the Lupron. Oh, No! The pains from the endometriosis came back with a vengeance. I went into the hospital in excruciating pain. Staff ended up giving me morphine, which felt like a blessing sent by God. For Real. I then had a sonogram and pelvic probe. Finally I could get some rest and sleep.

I had already had an appointment scheduled with Doc G. When I saw him I told him what happened and asked if all of my periods were going to be like this and he said he didn’t know. The Sunday after my period started I started taking birth control pills Doc had prescribed (ortho tri cyclen). The hope was that taking birth control pills would help me during my periods.

Is Participating in a Health Study for You?

Are you a part of a health study or clinical trial?


As mentioned in my earlier post, "Risk Factors for Fibroids in Black Women," not enough black women are participating in health studies for researchers and investigators to fully study and present solid results on the things that affect us (i.e. fibroids)


I have been part of the Black Women's Health Study for a number of years now.  99.9% of my participation has been through completing a questionnaire every 2 years.  Perhaps it was only once that I was requested to provide a saliva sample.  A couple of years ago, I found out that one of my aunt's has been part of this study.  I did not feel that the study was intrusive at all.


When I spoke to Dr. Wise at the summit to let her know I had been part of the study for some time, she was elated and thanked me for my participation.  Many of the doctors and researchers there stressed the need for participation of African-American women in studies.

Unfortunately, the BWHS cannot invite you to take part in the study. Due to the study design, only the 59,000 women who enrolled in the study in 1995 can participate.

The Black Women's Health Study had a prospective cohort of 59,000 black women ages 21-69 at 1995 (baseline year)

• Postal questionnaires were sent to Essence magazine subscribers.
• Baseline: demographic and lifestyle factors; reproductive and medical history
• Data is updated  every 2 years
• Cohort retention is greater than 80%

This is the study that I am familiar with, but I am sure there are others.  Check out the website at the National Institutes of Health (NIH) and think about how you can participate to help improve the health of black women.  


Talk to your doctor as she/he may be aware of trials or research that may be of interest or benefit to you.  


While clinical trials can lead to the development of medicines (which I still believe eating right, exercise and thoughts can/will heal), they also play a part in finding ways to prevent a disease all together.  Finding out why a disease occurs in the first place.

Call BWHS's toll free number is 1-800-786-0814.  Someone may be able to refer you to an on-going study.


Also, check out this NIEHS website for more information about fibroid studies and fibroids.

There is so much information out there.  Do your homework and definitely talk to your health care provider/partner.  If you do decide that participating in a health study is right for you, make sure it is one that you are comfortable with.  

Risk Factors for Fibroids in Black Women

The information presented below is based on the presentation of Dr. Lauren Wise, SCD., Associate Professor of Epidemiology, School of Public Health, Boston University.  [Not all information from the presentation is presented here or for the other Fibroid Summit posts.] 


Dr. Weiss has authored several fibroid-related publications including a chapter entitled "Uterine Leiomyomata in Women and Health," Second Edition.  She is principal investigator of fibroid studies that use data from the Black Women's Health Study, on ongoing prospective cohort study of African-American women, initiated in 1995.


This is the same Dr. Wise cited in the curly nikki post on fibroids and relaxers.


The presentation was based on recent findings from the Black Women's Health Study.


The findings presented were on 

• diet
• genetics
• psychosocial factors

Diet

An Italian study was conducted dealing with fibroids and meat: Chiaffarino et al. 1999

It is known that diet can affect endometrial cancers.

There is an inverse association with diary intake.

There was a 30% risk of fibroids for women who had 4 or more servings of milk.

There was no real soy connection; however, not many participants in her study ate soy.

Fruits and vegetables only presented a modest association with reducing risk.
Citrus fruits had an 8% decrease to the risk.

There were other dietary variables that one might have thought would have affected fibroid risk, but they did not.  I am not continuing on with this list because at a later point a woman from the general audience asked if the women in the study had fibroids.  I believe Dr. Wise stated that none or most of the women in the study did not have fibroids.  The same woman stated that she was able to control her fibroids / fibroid symptoms through her diet of eating fruits and veggies. [I wish I had gotten a chance to speak with her.]

It was stated that more black women should participate in health studies.  Also, as with any study, there were a number of limitations to this one.  It was noted that more research is needed.

Genetics

Basically, they looked at the percent of the European ancestry on the X chromosome and found that the higher the percent of European ancestry, the lower the incidence for fibroids.

Psychosocial

New data in research is suggesting that exposure to psychosocial stress influences fibroid risk.

• Severe stress in early life is associated with altered regulation of HPA axis.  In some cases, stress can up-regulate ovarian steroids and various growth factors involved in fibroid growth.
• Cross-sectional study: major life events, "stress intensity" (Vines et al 2010)
• BWHS: perceived racial discrimination (Wise et al 2007)
• NHS II: early life abuse victimization (Boynton-Jarrett et al 2011)

NHS - Nurse's Health Study; BWHS - Black Women's Health Study

Identified factors that appeared to have a positive association with the risks of fibroids were 

• Age
• African ancestry
• Early age at menarche
• Early age at first birth
• Early age at first oral contraceptive use*
• Being overweight
• Weight gain
• Hypertension*
• IUD use
• Alcohol*
• Stress (e.g. racism, child abuse)*

* more data needed

The results were mixed regarding - gynecologic infections and oral contraceptive use in general.

• Race/ethnicity presents a strong risk factor
• Compared with white women, black women have:

- 2- to 3-fold higher incidence

- Earlier age at diagnosis

- Larger and more numbers tumors at diagnosis

- Higher rates of hysterectomy due to fibroids

- [Unfortunately] The majority of studies involve white women.

Much More Research Involving African-American Women Is Needed.

As always contact your health care provider (whomever that may be) regarding your personal and unique health concerns.

Disclaimer:  Howard University College of Medicine/Howard University Hospital, and their staffs, and the National Institutes of Health and staff and the doctor/presenter and the blogger for "Sorry But I Had To Scream" are not responsible for injury or illness resulting form the use of medications or modalities discussed during this educational activity.

Websites I found interesting at first glance:

http://www.ehow.com/how_4805324_pregnant-fibroids-alternative-therapies.html

http://www.ehow.com/how_5462362_shrink-fibroids-naturally.html

Hirsutism and Hot Plates..... (Flashback! The wonder years? No, the awkward years!)

Was my first desire to scream when around my early to mid-teens, multitudes of hairs started growing out of my face and neck? Not the cute, soft, light peach fuzz, but dark course hairs that growl at you when you try to cut or pull them out. Side Note: My parents were really great about getting us to the doctors and tending to our health care needs. When my period started, my Mom started taking me to the gynecologist. Yep, there’s an experience for you. Won’t explain it – you know the drill. 

Anyway, my parents took me to a specialist at one of the major university hospitals to find out what was going on with me, my periods and this hairy situation. The doctors told me that I had a cyst on my ovaries, which was causing or was caused by hormonal fluctuations which was causing my erratic periods and acute hirsutism (my hairy face). Although I don’t specifically recall all of what the specialist said to do about it, he did suggest birth control pills as a remedy. Ah yes, birth control pills – treat the symptoms, not the cause. What was causing my hormones to be out of balance? I didn't even think about that question at the time.

The birth control pills helped to regulate my irregular periods and decreased my pain, but what about all of this hair. For this, I used depilatories and hot wax. I would go to the drugstore and purchase a bar of wax. When I got home, I put the cold wax bar in a metal dish, placed the dish in a pan of water and put the pan on the stove or a hot plate to heat up the water and melt the wax. Once the wax was melted, I then took the wooden spatula that came with the wax, scooped out some melted wax and spread it over the hairs on my face, chin and neck. Once it set, I then ripped the wax off along with those ugly, dark and course hairs. Oh, joy! I had to really watch using depilatories because the chemicals in the cream would leave my face red and irritated.

I am truly thankful that I came up in school when I did because no one ever really said anything hateful to me. The worst I can remember a guy saying to me was when I was in high school he pulled me to the side and said, “B, I think it’s time.” (as in time to get that hair off your face) Whew! I think that statement was pretty mild and I got off pretty easy.

Finally, I think it was my senior year in high school that I or my Mother found this lady in our small town that performed electrolysis (the permanent removal of hair by using a needle and electric current). A small, petite, middle-age white lady who lived in the center of the city and worked out of here home. What a blessing. I was so thankful for her and the work she was doing. Throughout college I think I was still doing the waxing and using the hotplate from time to time and in between visits home to see “Ms. Petite.”

Once I graduated and moved to the “big city” I was able to find another electrolysis practitioner, who over the years and with the help of birth control pills to manage my hormones, was able to skillfully and wonderfully get rid of all of those hairs and get my problem under control. She and Ms. Petite will always hold a special place in my heart.

Since that time I have seen a number of women with large amounts of course facial hairs. Some more pronounced than others – some looking like a five o’clock shadow because they shaved. Shaving, though, is supposedly better than plucking them out (I've been told) only because I learned that when you pluck hairs, they just come back stronger, darker and harder to get out. 

As you can imagine, having an electric current zap each and every individual hair was painful, but it was bearable and worth it to me. (of course, there laser hair removal now)

When I would see women with extreme facial hair, I lovingly wanted to tell them that there was hope – there was a solution. I knew exactly what they were going through and my heart went out to them. They were me and I was them.

Anyone had to deal with facial hair issues or know someone who did? Were you prescribed birth control pills to control the hair or control your painful periods?