Would I qualify for PIP?

poppy123456

Have you worked at all in tax years 2020/21 and 2021/22? 

loz_

I have not worked for a few years due to being in and out of several hospitals for my MH issues. I don’t know if that would cause problems with the application process? Neither of my health teams mentioned anything about any problems.

poppy123456

Then it’s unlikely you will qualify for New style ESA.

As advised in a previous comment of mine you will need to look at claiming Universal Credit (UC). If you have savings/capital of more than £16,000 you’re excluded from claiming. If you live with a partner you claim as a couple.

If you claim it then you will need to report your health condition and then send a fit note within 7 days of that. Some details here for claiming UC with a health condition. https://www.gov.uk/government/publications/universal-credit-if-you-have-a-disability-or-health-condition-quick-guide/universal-credit-if-you-have-a-disability-or-health-condition

chiarieds

Many of those with EDS don't have cardiac issues, tho I remember reading some 24% of those with hEDS could have problems going from mitral valve prolapse, which also occurs in the general population, to problems with the aorta), which is why my son & I see a cardiologist every year (apart from during the pandemic) after having an echocardiogram. However, this is more because my son looks like he has some features of Marfan Syndrome (arm span greater than his height, pronounced arachnodactyly & mild pectus excavatum). There can be some overlap between EDS & other heritable connective tissue disorders. The geneticist who diagnosed us said he couldn't rule out my son had a fibrillin defect (indicating Marfan Syndrome), but so far neither of us have had any problems with aortic root enlargement.

In 2017 a new type of EDS was first mentioned; the cardiac-valvular type, which is one of the rare forms of EDS, with an unknown prevalence, so still I don't know where your rheumy got the wrong idea from. I have generally found more up to date info from American specialists, & websites, I must admit.

The criteria for HSD & hEDS are still a work in progress, & being reviewed, but hopefully more will be understood this year. Currently this is used: https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf

loz_

Thank you @poppy123456 for clearing this up for me and for your help! I am going to look into claiming universal credit with my MH nurse. Your help is much appreciated. 

Hi @chiarieds,

Should my rheumatologist have referred me for cardiac testing before ruling hEDS out completely? She asked me if I have or have ever had any cardiac problems and I said I wasn’t aware of anything but I couldn’t be 100% sure and then she just left it at that. She also didn’t check for arachnodactyly. I think all conditions on the hypermobility spectrum are treated in the same way though? Obviously comorbid conditions would be treated too as you would know. 

I had heard there had been a new rare type of EDS mentioned from a friend who has cEDS. 

chiarieds

Hi @loz_ - evaluation for any cardiac problems would usually be unnecessary unless there were any symptoms. As mentioned, in our case it was because of my son's Marfanoid features (I have less pronounced arachnodactyly & arm span greater than my height, but we both have positive thumb & wrist signs).

Your rheumy may just have been going through the criteria, but you only need to have 2 or more of the other criteria (in the absence of a positive family history) for hEDS to be considered.

As you say, the management for both hEDS & HSD is the same.