Contaminated Blood: Don’t “woke” us too far, haemophiliac women and girls bleed too and in different ways say Grayson and Wintle

Colette Wintle who has spent her entire life managing haemophilia and the misogyny that surrounds it
(Original image, via Colette Wintle)

For decades women whose blood had a clotting deficiency were told even by some care providers that they could not be haemophiliacs. WRONG!

Although most haemophiliacs with the inherited bleeding disorder are men, there are female haemophiliacs too, though only officially recognized more recently.

In November 2018, Mike Makris, Professor of Haemostasis and Thrombosis in Sheffield, UK tweeted,

There are 920 female patients with #haemophilia in the UK (652 A and 268 B). The new ISTH SSC definition recommends that female carriers with FVIII/IX levels of less than 40% should be considered as having #hemophilia

One of which is this author’s campaign colleague of nearly 3 decades, Colette Wintle who is a female haemophiliac infected with hepatitis B and C and exposed to vCJD through her factor concentrate treatment taken to help stop bleeding. Many haemophiliacs were infected during the 1970s and 80s when blood was taken from virally high-risk donors such as drug addicts, gay men and sex workers and plasma products were imported from the US. As well aa the many problems of living with multiple viruses, Wintle has long highlighted the difficulties of being accepted as a haemophiliac in a misogynistic environment where even some male haemophiliacs have been confrontative and denied her medical status.

Regarding female haemophiliacs, Rare Disease Highlighter stated,

Miller and Bean, in their study published in Haemophilia on the genetic causes of hemophilia in women and girls, concur. They wrote, “The dogma that hemophilia affects males and is transmitted through unaffected females has over centuries hampered the recognition that women and girls with hemophilia may bleed as significantly as affected males.”

It was only around the mid-20th century that the medical world began to recognize and discuss cases of female hemophiliacs. 

The Centre for Disease Control state,

Hemophilia can affect women, too

Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of hemophilia. A female carrier can also pass the affected X chromosome on to her children.

Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis. Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is important to raise awareness about this fact to help women with hemophilia receive the care and support they need to live healthy lives.

Wintle who helps inspire others and was instrumental in working with the UK Haemophilia Society over 2 decades ago on their campaign titled “Women Bleed Too” has often highlighted there are some differences in the way female haemophiliacs bleed compared to men sadly often downplayed or forgotten. Here is Wintle’s experience of being a female haemophiliac in her own words.

Life with a bleeding disorder as a woman

In current climes women and girls are having to fight harder than ever before for recognition of their gender and biological sex. So it is now even more important that as girls develop into womanhood, and adapt to the natural evolvement of physiological changes in their bodies, they are supported through their experiences with periods, childbirth and menopause. This is especially important for females who have inherited bleeding disorders such as Haemophilia A, Haemophilia B, Factor X1, and Von Willebrands. All of these bleeding disorders impact on the quality of their lives, and they are particularly vulnerable in the healthcare sector where knowledge and understanding of these conditions has not received the recognition they so deserve in comparison to males with inherited bleeding disorders.

I am a female haemophiliac who was born into a family with a long history of the condition Haemophilia A, commonly known as Factor 8 deficiency. I was diagnosed at the age of three in 1962 at a time when the medical profession only recognised women as carriers of Haemophilia but not symptomatic of the condition! In my family, a well- respected haemophilia consultant researched my family history and discovered evidence covering a 200 year period of female relatives who had bled far more profusely than their male counterparts! Incredibly, it has taken until 2021 for the medical profession to finally accept and write about female haemophilia. Throughout my life I have received poor substandard treatment and suffered unnecessarily due to the ignorance and patriarchal attitude of many haemophilia clinicians, who thought they knew better than I,  living with the condition of Haemophilia. I hope that by speaking out over my lifetime and challenging the medical fraternity it has influenced the thinking and attitude towards women who bleed.

This was my experience of growing up with Haemophilia. When I was a child I was as adventurous and active as any other child and inevitably suffered from accidental cuts and  bruising and I experienced daily nosebleeds of varying severity. Although I was registered with a Haemophilia centre in Glasgow, I was never offered any haemophilia treatment, so I had to deal with small joint bleeds, muscle and tissue bleeds, and on one occasion had substantial bleeding from a dislocated elbow joint without any medical intervention. I spent months out of school with a substantial bleed that rendered my arm useless. I recall it was black from wrist to shoulder and twice the size of my other arm.

When I started menstruating at the age of thirteen, I bled for two weeks out of every month and over three years became severely anaemic. Each of these experiences had an impact not just on my health, but  on my schooling both in primary and secondary education. It alienated me from social interaction with my contemporaries and I struggled with my self- esteem and confidence. At no point was I ever provided with specialist medical support, advice or treatment! It was only after years of persistent problems with tonsillitis that I had my first ever treatment for post operative haemorrhaging.  I was treated with clotting factors (which I discovered 26 years later were imported from the US) and subsequently developed the life changing condition  of chronic Hepatitis. I had been exposed to Hepatitis C!

Further need for blood clotting treatment in 1982 and 1985 resulted in reinfection with hepatitis B and C placing my liver under additional attack and now co- infected with Hepatitis viruses. During the many hospitalisations throughout the 1990’s, I repeatedly pointed out that the level of bleeding I was experiencing was disproportionate to the diagnosis of being a mild haemophiliac, I insisted on the doctors revisiting the genetic diagnosis from 1962 and was found to be carrying a second bleeding disorder—- Factor 11. My instinct had been correct!  I had for many years been undertreated and suffered blood loss that could have been prevented. As a young woman I had to suffer in silence for years and deal with the indifference of the doctors who were charged with my medical care.

Even in childbirth I was neglected by the medical profession.

Throughout my first pregnancy I was abandoned by the local healthcare providers without an assigned midwife because I resided outside of the health authority district in charge of my haemophilia care. At that time, I was registered at a haemophilia unit in London as there was not a local unit. Subsequently, I had very little care or consultation with anyone other than my GP until nearer to my due date. My daughter entered the world three weeks early and I was forced to make a stressful three hour journey to a north London hospital whilst in labour. Due to complications,  I underwent an emergency caesarean. Due to the geographical distance between home and hospital I was separated from the support of my family and husband.

During my two weeks incarceration in the hospital, I received extremely poor and often non- existent nursing care, which resulted in me suffering an internal bleed on top of my caesarean wound. It took a week for the doctors to attend to it, scan and treat me. Because of this appalling lack of care, I was forced to remove my IV line delivering much needed treatment, because there was simply no one to take care of my new baby, who was left in a cot at the side of my bed. What should have been a wonderful experience turned into a miserable one and reduced me to tears. I struggled to recover from this for a long time afterwards, and this was in addition to also suffering the symptoms of an ongoing liver condition!

As time went on my health deteriorated and I was forced into early retirement from my job as a nurse. Many other serious illnesses followed and major surgeries including the loss of an ectopic pregnancy and the loss of a twin pregnancy. At no point was I ever offered counselling or practical help but had to soldier on as I had previously. As my liver disease progressed, I was encouraged to undergo anti- viral chemotherapy treatment to eradicate the Hepatitis virus. I was left to administer the treatment by self- injecting with Interferon and Ribavirin medication. It was a terrible experience physically, mentally and emotionally with no assistance whatsoever from any healthcare workers. The treatment caused extreme physical damage. I was in constant pain, and I also developed other medical conditions. Worst of all, it caused an early onset menopause.

Yet again there was no available access to care, advice, counselling, or medical treatment. I experienced numerous unpleasant symptoms and side effects such as night sweats, itching skin , mood swings, increased fatigue, hair loss and flooding until many years later I was offered a coil insert which controlled blood loss. I had to put up with all these unpleasant symptoms over a period of twenty years.

When I consider my lifetime of living with haemophilia and all that I endured at the hands of health care providers, I realise that it has been a long continual battle to get the level of care I should have received. Much of this caused by the resistance of the many doctors to acknowledge my experiences and who dismissed and ignored my obvious medical needs. As a woman living with haemophilia, I believe even more strongly now that we must remain vigilant in protecting  future generations of women with inherited bleeding disorders, and their right to access the same standard of healthcare available to men. In recent times there has been a shift in attitudes which I am very glad is evident in the research being published and reported in medical literature currently. There is greater awareness of woman with bleeding issues now,  but it is vital that we ensure going forward,  that no one should experience the battle for professional medical care as I did.

Colette Wintle

End

The NHS “Overview” of Haemophilia largely avoids mentioning biological sex in its online information pages other than to say, “Haemophilia is a rare condition that affects the blood’s ability to clot. It’s usually inherited. Most people who have it are male” and advises to “avoid contact sports such as rugby.” However this alone does not help when it comes to those wishing to learn about how women may bleed as in the sections about types of bleeding, it simply ignores periods, childbirth and the menopause. (Also, to make a point, it can be highly uncomfortable indulging in any sports with a headache, painful cramping and heavy menstrual bleeding though that appears to be missed.) See following,

https://www.nhs.uk/conditions/haemophilia/#:~:text=Haemophilia%20is%20a%20rare%20condition,sticky%20and%20form%20a%20clot.

Now after years of misogynistic treatment with regard to female haemophiliacs bleeding, there are attempts to stop referring to the words “girls”, “woman” and “women” in relation to periods even if it did appear in the NHS haemophilia section. Today the Metro published an article on a separate section on menstruation in general with the title, NHS guidance on periods doesn’t mention girls or women once. The Metro states,

An NHS website about periods has triggered a debate for using gender-neutral language instead of the terms ‘girls’, ‘woman’ or ‘women’.

Bloody Brilliant was commissioned by the Welsh government and the NHS last year, costing the taxpayer £84,000.

Is this yet another way to write women out of the equation and lesson their voices? Females identify with these words and its particularly helpful in medical conditions where through biological sex, conditions may present somewhat differently in men and women such as haemophilia.

As Healthline explained…

A woman’s period and hormonal changes are the result of her natural reproductive cycle, sex therapist Janet Brito, PhD, LCSW, CST says. “The hormonal changes she endures are in preparation for possible conception. [Cisgender] men do not experience the cycle of producing ovocytes, nor do they have a uterus that gets thicker to prepare for a fertilized egg. And if conception does not occur, they do not have a uterine lining that will be released from the body as blood through the vagina, which is what is referred to as a period or menstruation,” Brito explains.

“In this definition, men do not have these types of periods.”

Individuals can present as who they wish to be, that is their choice however they can’t simply cancel out biological sex nor should they, nor the fact that women and girls will bleed differently to men through having their period, childbirth and throughout the menopause and the implications and complications that may bring. Female bleeders and service providers need to educate themselves, learn how to manage these times, access and provide support and language is important. So, when so called “woke” crosses the line and starts to verge on the damaging and sometimes dangerous, and biological facts are obliterated, then for the sake of good health, woke is best cancelled out!

Ginger Rogers once said about dancing… “I do everything the man does, only backwards and in high heels!” In terms of haemophilia, women get most of the bleeds men get (bar those related to cock and balls) but in addition add on periods, pregnancy and the menopause, whilst dealing with an often male orientated plan of care and then facing misogyny!

Link, for further Information on women who bleed

How bleeding disorders can affect women (UK Haemophilia Society)

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.

About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency http://www.esrc.ac.uk/ESRCInfoCentre/PO/experts/Health_and_Wellbeing.aspx Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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