The patient journey | Migraine

05/18/21 • 20 min

In this podcast, Patient X talks to us about her patient journey and her experiences, as both a patient and patient advocacy leader.

Five years ago, a high impact event led to Patient X being diagnosed with chronic migraines. Patient X is a volunteer with several migraine and headache non-profit organisations, she has a Master of Public Health and Epidemiology and works as a health economics and outcomes research worker.
Migraines have many manifestations and according to the International classification of headache disorders, more than 50 types, these include migraine pain with and without aura, chronic migraine, menstrual migraine, hemiplegic migraine - a rare type involving temporary weakness on one side of the body, migraine with brain stem aura, vestibular migraine, predominant vertigo, abdominal migraine, cluster headaches, and many more.
There is much more than just head pain in a migraine or headache, the heterogeneity of diseases and social determinants of health for example, race, urbanicity, and access to health care providers makes it hard to consistently identify migraine patients.
Advocacy is key to combating the burden of migraines. There is stigma attached to migraine disease related to the historical view that it was a 'hysterical woman's problem' which was not serious and could be cured by simply 'popping a pill’.
Educating the wider population about the wide variety of symptoms of migraine and removing that stigma is essential in reducing both the clinical and economic burden of the disease.

In this podcast, Patient X talks to us about her patient journey and her experiences, as both a patient and patient advocacy leader.

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The patient journey | Fibrodysplasia Ossificans Progressiva (FOP)

Chris and Helen Bedford - Gay are the founders and patient advocacy leaders at FOP Friends charity. In 2009 their first child, Oliver, was diagnosed with FOP, aged just one.
FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects.
In this podcast they talk to us about the patient journey and their experiences as both parents of a child with FOP and patient advocacy leaders.

FOP is an ultra-rare disabling genetic condition and is one of the most disabling conditions known to medicine. FOP causes the soft connective tissue of the body to turn into new bone. When that occurs over or near joints, or within a muscle, it restricts the person’s movements. This new bone, or ossification, can mean that the sufferer is no longer able to move the joint. Once movement has been lost in a part of the body, it is not possible to remove the new bone as that can aggravate the FOP and trigger further bone growth.
FOP is characterised by congenital malformations of the big toes and progressive heterotopic ossification (HO) in specific anatomic patterns. FOP is the most catastrophic disorder of HO in humans. Flare-ups are episodic; immobility is cumulative. A common mutation in activin receptor IA (ACVR1), a bone morphogenetic protein (BMP) type I receptor, exists in all sporadic and familial cases with a classic presentation of FOP.
Chris and Helen discuss how educating the wider population ensuring an early diagnosis, is key to preventing further heterotopic ossification.
There is currently no treatment for FOP. As a patient organisation investigating all avenues of research and finding more FOP doctors, who are willing to be educated about FOP, is essential.