Founder Story

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Founder Story

TLDR (The full story is way too long): The healthcare system is too complicated and once a couple things go wrong, you fall into a maze with barrier after barrier. It is exhausting.
We have better things to do with that time and energy.
Let's help women to stay healthy and to regain health.

The long version:

Our founder, Dr. Umbereen Nehal, found herself needing six blood transfusions and needed to interrupt her executive MBA to go on medical leave. Powering through being "tired", she had been ignoring symptoms of severe iron deficiency anemia, that she had developed from a combination of gradually worsening fibroids and endometriosis. Despite two prior surgeries for this, no one was following her health status to make sure she was doing okay. She was too busy pursuing goals and volunteering in the community to notice what her body was trying to tell her.

Umbereen had been diagnosed with both fibroids and endometriosis almost a decade earlier when she had been told she had "low ovarian reserve" during egg freezing. What that meant is she was already in early perimenopause in her 30s. Like happens to too many women, Umbereen's endometriosis was diagnosed decades late. As a result, she had to spend 3x more on the cost of egg freezing hormones compared to other women. (She experienced damage to her ovaries while she was not diagnosed and not treated for endometriosis.) She also experienced more side effects from needing higher dose hormones. Although the long term risks of high dose hormone exposure for egg freezing have not been studied, Umbereen took those risks and paid out of pocket to preserve fertility. It is unclear how much those hormones could have worsened her underlying conditions. That is one of many examples of missing data.

Then, in 2022, when Umbereen first ended up in the emergency room needing the first blood transfusion, the doctor first tried to dismiss her symptoms as "mental health" until the blood test result came back. (The doctor only "believed" her based on a number/data, not on what she was saying.) When she tried to choose a less invasive surgery, the fibroids had grown too big and she was advised a hysterectomy. She tried to get second opinions but had to wait months to get an appointment just to get basic health information on what her choices or options were.

Not wanting to rush into the wrong surgery, she chose to go on a medication first. Even though newer options were available, she was put on a less expensive >30 year old medication designed for (male) prostates. Instead of getting better, Umbereen experienced a rare medication complication and worsened bleeding. Then, she then needed a blood transfusion every 1-2 weeks. Also, for one blood transfusion, she was nearly given the wrong bag of blood by a nurse who was distracted. Another time, in the prep for a surgery, she was almost administered a wrong drug when the electronic health record was done. These errors in care made her unsure how to get safe care.

When she did get a pelvic surgery, Umbereen experienced new pelvic pain from adhesions (scar tissue caused by surgery). This meant she had to further delay her return to her MBA and focus more time on getting her health back. In addition to having to extend leave, she had to cancel travel for her consulting work (how she supports herself), she could not travel to see her aging father, she could not exercise to maintain healthy weight (while on hormones she had gained weight), and she could not do things she loved. She had to ask three times to get approved for pelvic floor therapy as her doctor had believed that insurance would not pay for it until she had demonstrated dysfunction and poor outcomes.

With pelvic floor therapy to optimize her health after surgery, Umbereen improved and finally got her life back. Now she is able to function well again, do work, exercise,  see family and friends.

Umbereen experienced all this is despite being a physician herself.
If someone who is a doctor, a former Chief Medical Officer, a frequent invited public health expert to the White House, a Harvard School of Public Health graduate, and a national grassroots organizer could get so severe and struggle... what happens to other women?

It should not be this hard.

The system is broken and we need to take control of our own health.
We need science that works for us, for our bodies, for our health.
We need ways to communicate so we are heard and can stay healthy or get back to health.
We need what we are feeling to be converted "data" that doctors, insurance, employers  hear us, understand us, and believe us so we get care or supports to stay healthy.

Like many women, Umbereen could have avoided so much of this if only common conditions that affect women's health were tracked and prioritized for women's own health and wellbeing. Women should not have to reach crisis or disability to be heard or receive care. 

One way to this is to track "quality of life."

We need to be able to hear ourselves (listen to our bodies), be heard (better communication with the health system), and find a "herd" of support to stay healthy, well, productive, and to live well.

Hear yourself
Be heard
Join the HERd